201309 Considerations and Options for Authorized Representatives With 4 Attachments

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PARENTS AND ASSOCIATES OF THE NORTHERN VIRGINIA TRAINING CENTER

Considerations and

Options for AuthorizedRepresentatives

September 2013

This pamphlet was developed by the Parents and Associates of NVTC to assist you indeciding whether to transition the resident you represent into a community

placement.



Parents and Associates of the Northern Virginia Training Center September 2013

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CONSIDERATIONS AND OPTIONSFOR AUTHORIZED REPRESENTATIVES

Table of Contents

Introduction ............................................................................................................................................... 2 Your placement options.................................................................................................................... 2

Training Centers ............................................................................................................................ 2 Community waiver funded placements .................................................................................. 3 Community ICFs/ID ...................................................................................................................... 3

Guide to Community-Based Supports ......................................................................................... 4 Essential background ........................................................................................................................ 4

Settlement Agreement Requirements .................................................................................... 4 What is the likelihood that the closure date will be extended? ..................................... 5 Prospects for NVTC remaining open indefinitely ............................................................... 6

Your Options: Pros and Cons of Community Placements .......................................................... 7 Would your family member benefit from community placement? .................................. 7 How vulnerable is your family member? ................................................................................... 7 Can you be present for the placement process and follow up long-term? .................... 7 Are you unable to be present or follow up? .............................................................................. 8

Who to Trust ............................................................................................................................................. 8 Who are the players in the transition? ........................................................................................ 8

NVTC health professional and direct care staff .................................................................. 8 Discharge planners and social workers ................................................................................ 9 Support Coordinators from CSBs ............................................................................................ 9 Providers of supports in the community ............................................................................... 9

Other players who can help ............................................................................................................ 9 Health professionals taking Medicaid ................................................................................. 10 RCSC for dental and other services....................................................................................... 10 START .............................................................................................................................................. 10 The Arc of Northern Virginia ................................................................................................. 10 Adult protective services .......................................................................................................... 10 Privately hired case managers............................................................................................... 10

More Detailed Aids to Your Decision Making ............................................................................. 11

ATTACHMENTS begin on page 12




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Considerations and Optionsfor Authorized Representatives

This pamphlet was developed by the Parents and Associates of NVTC to assist you in deciding whether to transition the resident you represent into a

community placement.

Introduction

In December of 2012 and May of 2013, your family member, or you as his or herAuthorized Representative (AR), received letters from the Department of BehavioralHealth and Developmental Services (DBHDS) declaring that Northern Virginia

Training Center (NVTC) was to close on June 30, 2015, and stating that all residentsmust vacate by March of 2015. If NVTC closes, as the current DBHDS administrationplans, you will have to decide where your family member resident will go next. Thispamphlet identifies your choices and points to consider in deciding among yourplacement options. It also explains your legal rights, discusses the prospects for NVTCremaining open, and who to trust for what kind of information.

We are parents, siblings, family members, that is, ARs just like you. As such, we canraise issues and offer suggestions that government employees cannot. We also speak from the vantage point of our intense involvement in advocacy for NVTC since theSettlement Agreement was made public and the DBHDS presented its closure plan in

January of 2012. Subsequently, we have been tracking and advocating for our lovedones and yours in many forums, including the courts and the General Assembly.However, we are not professionals in the care of those with Intellectual Disabilities orDevelopmental Disabilities (ID/DD) and, of course, each one of you must decide thefuture care for your family member. We hope this pamphlet can assist you in makingthat decision.

Your placement optionsThe Settlement Agreement affords you a choice of three options. We introduce themhere and, after explaining essential background, discuss the pros and cons of eachoption.

Training CentersVirginia’s Training Centers are , technically speaking, state-run Intermediate CareFacilities for Individuals with Intellectual Disabilities, abbreviated ICFs/ID. 1 ICFs/IDuse a “medical model ” in which doctors and staff develop a program of active treatment for each resident and Medicaid funds those prescribed treatments.

1 The federal government uses ICF/IID while the Commonwealth uses ICF/ID.




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While the Settlement Agreement affords you the right to choose a Training Centerplacement, it also permits the Commonwealth of Virginia to close NVTC and providethat placement in a different center. Both of the letters you have received indicatethat Virginia intends to close NVTC and move those who wish to remain in a TrainingCenter to another Center. However, we believe there are still uncertainties about

when or whether NVTC will actually close.Community waiver funded placements

Home and Community Based Services “waivers” offer a means of funding supportsfor individuals to live in the community, in a group home, in their own home, or intheir family’s home. Waivers are also funded by Medicaid, but each state negotiateswith the federal agency managing Medicaid to agree upon a menu of supports. Thewaiver agreement designates what those supports will cover as well as the rates tobe cost-shared with the Commonwealth. The Commonwealth can supplement boththe coverage and the rates beyond these cost-shared provisions. Individuals applyingfor waivers must first qualify for ICF/ID placements and then “waive” their right to

such placement in favor of an individually negotiated package of supports in thecommunity taken from the overall waiver menu.

Waivers typically cover direct care supports, most nursing, and, in some cases, daysupports. But currently other supports, such as medical care and therapeutictreatments, can only be obtained separately from professionals who will accept Medicaid payments. While room and board is covered by the resident’s SocialSecurity disability payments, some other supports are covered neither by waiver norby Medicaid, for example, dental services. These supports have to be covered byother negotiated arrangements with DBHDS or your waiver provider.

The second DBHDS letter describes a process for transitioning from NVTC placement into a community waiver placement. Some NVTC residents could benefit from theadditional freedoms offered by community waiver placements, but current limits onstaff funding and the types of supports present severe challenges in being able toadequately support those with complex medical or behavioral conditions.

Before you waive your right to a Training Center placement, make sure thewaiver supports will meet the needs of your resident. The person you represent is legally entitled to care comparable to what he or she is receiving at NVTC. Themost recent report on implementation of the Agreement by the Independent Reviewer articulates the standard of care the DBHDS has agreed to: “ DBHDS hasassured ARs that they will have choices of community programs that are equal to, orbetter than, current services.” This pamphlet and the accompanying The Arc of Northern Virginia transition guide entitled “Community -Based Supports, ” addressthat determination in detail.

Community ICFs/IDVirginia also has community ICFs/ID run by either local Community Services Boards(CSBs) or private providers but also funded by Medicaid, just as the Training Centersare. Operators of community ICFs/ID, however, can place restrictions on who




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qualifies for their services. For example, some may require that each resident must be mobile rather than wheelchair bound.

Community ICFs/ID are typically much smaller than NVTC and situated in more of aneighborhood setting. At present, there are very few community ICFs/ID in NVTC’sregion, and no more are likely to be built by March of 2015.

Guide to Community-Based SupportsParents and Associates of NVTC thank the The Arc of Northern Virginia forpreparing an extensive guide , “Community -Based Supports,” for those of you whochoose to transition your family member into a community waiver slot. Their 67-page guide, entitled “Community -Based S upports,” is Attachment IV to this pamphlet.

Although we have not always agreed with The Arc of Northern Virginia on manyissues, The Arc of Northern Virginia ’s staff and membership have a great deal of experience and knowledge about community placements, which they are graciouslysharing with us. The guide should be of great help if you are looking to see if thereare adequate community supports and considering transitioning your familymember to a community waiver placement. The authors of this pamphlet workedclosely with The Arc of Northern Virginia for several months to refine their guide,which now addresses most of the concerns that we brought up.

The guide, however, is not intended to, and does not address all of your options or theissues associated with choosing among them. That is another reason that we havewritten this companion pamphlet, to introduce those options and raise issues that lieoutside the scope of The Arc of Northern Virginia ’s guide .

Essential background

These are important facts to help you understand the options available to you.Settlement Agreement Requirements

The Settlement Agreement between the Department of Justice (DOJ) and theCommonwealth of Virginia includes the following important provisions for TrainingCenter residents:

Offers a waiver slot in the community and a process for transitioning to thecommunity for those who want to accept that waiver slot.

Requires upgrades to behavioral stabilization services and qualitymanagement for everyone in a community placement.

Assures ARs the right to choose a Training Center placement, but reserves to DBHDS the right to decide which Center will provide that placement.

The Settlement Agreement does not require closure of any of Virginia's TrainingCenters. The decision to close NVTC and three other Centers was a decision by theexecutive branch of the Commonwealth. As the judge in the case indicated, the




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ultimate decision whether to fund the Training Centers lies with the GeneralAssembly. The one-page Attachment III entitl ed “The Rights of Training CenterResidents Under the Settlement Agreement, Federal Law and State Law” offers moredetails.

What is the likelihood that the closure date will be extended?As stated in its letter, DBHDS set March of 2015 as the date for emptying NVTC inpreparation for closure at the end of June of 2015.

This date is a purely administrative choice and could be extended or rescinded by avote of the General Assembly, a future DBHDS administration, or as a result of a court challenge.

What are the prospects that this closure date for NVTC will be extended a fewyears or indefinitely? While no one can answer this question with certainty, it appears as if there is a good chance the date will be extended, but it is less likely that NVTC will remain open indefinitely. Why do we say this?

The community is not ready to receive all NVTC residentsThe NoVA CSBs and 18 major providers have said that the community cannot support all NVTC residents by the closure date, especially those with complexconditions. They say the community is not ready because:

The wage rates for staff are insufficient to provide necessary supports forthose with complex conditions.

There are insufficient residences in the community with the accommodations,such as wheelchair accessibility, that are necessary to support most NVTCresidents.

Providers are unwilling to build new community residences unless there arehigher payment rates and expanded waiver provisions.

There are inadequate health care professional rates and coverage to support those with complex conditions.

There is insufficient time to get the permits and build community ICFs/ID forthose who will require this level of support.

A Joint Subcommittee of the Virginia finance committees is reviewing the viability of

the DBHDS-planned closure schedule.Coming improvements to the community options

Over the next 2 years, several major improvements to community options shouldgreatly enhance the ability to support NVTC residents who have complex needs:

A new waiver is being developed and negotiated with the federal government.While new waivers might be agreed upon by summer 2014, fullimplementation might have to wait until the General Assembly acts to




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increase funding. Thus, a significant extension of funded coverage and rateswould not be in place until summer of 2015.

Only after an improved waiver is agreed to will group home providers bewilling to expand substantially capacity and offer appropriate placements for

those with complex conditions. With two more years to plan, the CSBs and private providers might well build

new community ICFs/ID in NoVA.

Other important community enhancements will have time to be fullyimplemented and proven able to support those with complex needs.

The needs of those in NVTC are a prime motivation for Virginia to make theseenhancements to community supports. We who represent NVTC residents should beaware of these potential enhancements and ensure that the supports our familymember needs are in place before we accept a community waiver placement.

Prospects for NVTC remaining open indefinitelyThere are good reasons to keep a smaller NVTC open indefinitely as part of a localsystem of supports. Although there is some hope that the current situation willreverse itself, DBHDS, DOJ, the NoVA CSBs, The Arc of Virginia and those who want NVTC’s land for other purposes remain committed to seeing it close. Overall, thesituation is very uncertain.

The best hope for keeping NVTC open would be for the state to accept its ownnumbers that show that far more ARs wish that their family members remain in aTraining Center than the number of beds that DBHDS has put aside to accommodatethat choice. DBHDS’s current plan is to keep only the 75 -bed Southeastern VirginiaTraining Center. However, by its own survey, statewide, 439 of the 788 ARs answered“no” or “absolutely no” to moving their residents into the community. At NVTC, theARs for 55 of 135 residents are in these two categories, and another 39 onlyexpressed a willingness to tour or receive education about a waiver placement.Given these numbers, DBHDS almost certainly will have to revise its plan, and we areworking to sustain a smaller , “right -sized” NVTC as part of that revised plan.

Another scenario for keeping NVTC open, in a smaller footprint, would be if the next governor and General Assembly were to conduct an objective and complete economicanalysis to guide the deliberations. In a comparison of NVTC versus community costsfor people with comparable disabilities, we believe that NVTC’s economies of scale,flexibility of services, and the quality of life benefits from its many volunteers woulddemonstrate NVTC’s superior value to the state. Such an analysis would provide anobjective basis for planning integrated supports for those with ID/DD.




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Your Options: Pros and Cons of Community Placements

The DBHDS is pushing very hard to get you to consider a community placement . We

recommend that you look, as you may find a place that works well for your familymember and because NVTC may no longer be an option in the future. In thischanging environment, you should begin considering your options now so that youwill be prepared to act if you have to do so on a short schedule later.

When considering whether or not to transition your family member from NVTC intothe community, we suggest you start by asking yourself the questions addressed inthe remainder of this pamphlet and its Attachments, especially Attachment I,“Comparison of NVTC and Community Supports .”

Would your family member benefit from community placement?

A community placement should offer your family member greater freedoms of personal choice. But this also depends upon the degree to which your family membercan communicate his or her needs and make decisions necessary to exercise greaterfreedom. A community placement might be closer by and offer more frequent contact with other family members and others who care. But this depends upon findingnearby placement or whether family and friends might move. Overall, there arepeople at all levels of disability who have benefited from community placement andsome who have not.

How vulnerable is your family member?NVTC offers much more robust coverage of the medical and behavioral needs of

residents and provides many more protections against the risks of treatment errors,physical or mental abuse, or neglect. For example, NVTC has more professionalsupervision from nurses and physicians, more experienced direct care staff, andmany layers of oversight to identify and remove any staff member who poses a risk of abuse or neglect. By contrast, oversight in the community depends primarily onproviders ’ willingness to report themselves for incidents and to create a staff cultureto prevent incidents. There are several ways to enhance community protections; forinstance, by picking a provider with a proven track record of stable employment and aculture of doing things right, involving your family member in day programs andactivities enabling others to detect problems, and ensuring that staff have extensiveexperience and training in their positions. So, before accepting a community

placement, you should seek assurance that the community will provide the supportsand protections the person you represent needs. Nonetheless, the family orguardian, or other agent working on your family member’s behalf, needs to be quiteinvolved in oversight by visits and other monitoring.

Can you be present for the placement process and follow up long-term?Community placements depend upon your active participation to find and sustainadequate supports. In the transition process, ARs work with others to identify and




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then find providers for every necessary support, typically a residential waiverprovider, a day support waiver provider, and health care professionals willing toaccept Medicaid. This is where the The Arc of Northern Virginia ’s guide and thispamphlet’s comparison of Training Center and community supports will help.Unanticipated needs or situations arising in the community will require more active

participation by family, guardians, or agents than for an NVTC resident.Are you unable to be present or follow up?Training Center placements offer stability, even if NVTC were to close. If you or otherfamily members are unable to be present, this most likely means that placement inanother Training Center would not affect the frequency of visits to your familymember. This might be important in deciding whether to transition or not.

If you believe that your family member would benefit from a community placement,there are options for establishing “proxy” forms of help in placing and supportingyour family member. Because guardians of those already in community placementsalso face this challenge, they have developed two different options for enduringoversight and management of your family member’s needs. Microboards consist of volunteers that you recruit, and they would agree to manage a corporation set up toserve your family member. Alternatively, you could retain a privately hired casemanager to act as your family member’s advocate. Both of these options aredescribed in The Arc of Northern Virginia ’s guide.

Who to Trust

This is an important and difficult question to answer. It must be qualified by asking,“Who shou ld I trust for what information?” since each person has different experiences, expertise, and professional or organizational constraints.

Members of the board of Parents and Associates of NVTC are the least compromisedby professional and organizational constraints, and we face many of the issues that you face. But we are also just learning about the community and, with a fewexceptions, are not health care professionals. In general, we are concerned that thelevel of community supports will be considerably lower than were enjoyed at NVTC. We will look for ways to share what we learn as we learn more.

Who are the players in the transition?Other than yourself, there are four principal players in the discharge planningprocess. When exploring community placement options, these players will be theprimary sources of information.

NVTC health professional and direct care staff We strongly encourage you to make sure these NVTC staff, who are most responsiblefor your family member and have the most intimate knowledge of their needs,participate in any evaluation of the condition of your family member. Having the staff




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present would be consistent with one element of the Olmstead decision’s three prongtest for determining what constitutes “unjustified insti tut ionalization,” that “the state’streatment professionals have determined that community placement isappropriate .” (The other prong that is relevant to your decision is that “ the transferfrom institutional care to a less restrictive setting is not opposed by the affected

individual”)

Discharge planners and social workersThese planners can be very helpful in orchestrating the many aspects of thedischarge process, but remember that they were hired by DBHDS to encourage ARsto accept waiver placements.

Support Coordinators from CSBsPreviously known as case managers, many of these professionals know thecommunity options well. As county employees, they are less constrained by DBHDSpolicy and more independent than discharge planners. They will work to find a good

match between your family member and providers of needed supports by helpingwith assessments, tours, and planning. Please note, however, that they are bound byprofessional ethics not to show any preference for one community provider overanother. However, if asked, they could recommend which providers on the long list of alternatives you might look at first in your search for the best fit with a qualityprovider for supports and living arrangements.

Providers of supports in the communityIf a provider indicates they have the ability to support your family member in acommunity placement, that provider will most likely present their offerings in afavorable light. Almost always providers do not accept someone they suspect theycannot support. Yet misunderstandings of the challenges have happened, and it isyour responsibility, with the aid of the NVTC staff and Support Coordinator, to ask the necessary questions to assure that the provider understands and is able to give allthe necessary supports. Visiting several providers gives a comparativeunderstanding of different providers' strengths and weaknesses. If a day support provider as well as a residential provider will be part of the total support package,each might give insights into th e others’ services.

Note that Attachments I and II to this pamphlet, as well as the The Arc of NorthernVirginia guide, raise issues and offer questions to explore with prospective providers.

Other players who can helpIn searching for a community placement and during or after transition for those whochoose the community, there are several others who can provide valuableinformation and support. By collecting and comparing information from all thesesources, we all become more knowledgeable. You should especially identify thosewho would provide these supports or other forms of help once in the community andcontact them for an appraisal of the proposed transition plans.




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Health professionals taking MedicaidAsk your CSB Support Coordinator who would be providing health and behavioralservices, any necessary therapies, and dental care once your family member is in thecommunity. You might consider talking with these health professionals about thetypes of services your family member would require and whether direct Medicaid

funding would be sufficient. Since some family members might qualify under privateinsurance, CSB supports, or other sources, explore these as well.

RCSC for dental and other servicesIf NVTC closes, the DBHDS is planning to preserve the RCSC cadre of healthprofessionals to serve those now in the community. You might talk with some of these professionals, who might well be current NVTC employees, to explore theirconfidence that they will be available to provide ongoing support.

STARTIf your family member is at all at risk for having behavioral problems that wouldrequire stabilization or special skills on the part of the direct care staff, the STARTprogram staff and respite facility were set up to provide temporary stabilizationservices and training to direct care staff. A conversation with START staff might behelpful. If there is any risk of prolonged acute behavioral issues or need for specialliving arrangements, ask how these would be provided.

The Arc of Northern VirginiaThe Arc of Northern Virginia is very knowledgeable about the supports available inthis region as well as the challenges of getting those supports. In addition to theirguide, you might contact their offices at 703-532-3214.

Adult protective services

Adult Protective Services will investigate any suspicion of abuse or neglect. They dothis confidentially.

Privately hired case managersAnother possibility would be to engage a private case manager to follow up inoverseeing the system of supports once your family member is in a communityplacement. We have heard about this type of service, but do not know how effectivethese private agents are for continuity when other family members cannot participate locally. Page 57 of The Arc of Northern Virginia ’s guide has contact information for Elder Care Consultants, who may be able to help directly or else referyou to other services.






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ATTACHMENTS



ATTACHMENT I

Comparison of NVTC and Community Supports

This attachment highlights those supports offered at NVTC that areoffered in a different manner or not at all in the community. You

should be aware of these differences.




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Attachment I:Comparison of NVTC and Community Supports

Parents and Associates of NVTC compared those supports available to NVTC residentswith corresponding supports in the community. We found that the two systems of supports are quite different and there are a few gaps in the community system. That does not mean that community placements would not have great benefits for someNVTC residents. We suggest you consider the cautionary aspects presented here asthings to examine in exploring community options rather than a condemnation of community placements.

We will comment on community ICF/ID placement options as well, and where we donot mention community ICF/ID coverage, we assume it as comparable to NVTC

coverage. Note that a community ICF/ID provider might apply special restrictions onthe services they offer, so be certain to ask about any restrictions.

For the greatest detail on the community we refer you to the The Arc of NorthernVirginia guide, “Community -Based Supports. ”

Emergencies and stabilizationMajor medical or behavioral episodes require hospitalization for both NVTC andcommunity ICF/ID residents. Yet there are important differences between ICF/IDand community utilization of hospitalization and behavioral stabilization services.

Hospitalization for major medical and behavioral needsThere is evidence that NVTC preventative services and the option for ObservationCare Unit monitoring with more nursing attention prevents many hospitalizations.Ask about the risk of acute or chronic medical conditions developing for your familymember without preventative care, frequent nursing visits to living areas, or periodicintense observation.

Does the waiver provider have a direct care staff person familiar with your familymember’s need s accompany the member to the hospital, as NVTC does ? Today’swaiver does not compensate providers for this cost, yet some do it anyway. TheDBHDS also is concerned about this issue and is developing a plan. When it is inplace, evaluate it, and plan to obtain these supports whenever necessary or throughany private insurance the family member might have.

START for behavioral stabilizationAsk about the risk of needing behavioral stabilization and whether there is a highrisk of needing START services. Remember, the START program is new and might not be fully mature for some time.

The Arc of Northern Virginia guide includes an overview of START.




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Access to professional health care servicesDoctors, therapy treatments, and some nursing services are not covered or arelimited by the current waiver. Instead, community waiver residents must rely onprofessionals who accept direct Medicaid payments or any private insurance thefamily member might have. Community ICF/ID facilities with typically 8 to 12 beds

have coverage just as NVTC has, but most health professionals would not be oncampus.

While the current waiver covers a consultation with therapists, it does not covertreatments by them. This applies to all therapists, including physical, occupational,and speech therapists.

RCSCCommunity residents rely heavily on the Regional Community Support Center (RCSC)at NVTC for dental services. Those with very low mental development or with sometypes of behavioral issues require full anesthesia just for a simple tooth cleaning.

This requires a dentist with subspecialty training. Other RCSC services might becrucial to individuals in the community, and these should be reviewed foraccessibility, payment, and importance to wellbeing. We suggest you monitor theDBHDS plans to replicate the RCSC in the community.

Skilled nursingThe waiver pays for a level of skilled nursing care, but this might be inadequate forsome with very intense needs. Ask about any restrictions or caps on skilled nursingservices.

For those requiring frequent treatments, observation, or staff supervision from askilled nurse, community placements might not be able to afford such care under thecurrent waiver. Other provisions and sources of funding might be required.

TransportationUnder the current waiver, there are many issues related to obtaining adequatetransportation in the community. If your family member needs any of the following,ask if the community providers offer it.

Does your family member need an attendant in addition to the driver, and willan experienced staff member accompany your family member to the hospital,to medical or therapy appointments, and/or to a day program, on all trips?

Does the provider have its own van equipped to transport your familymember?

Does your waiver cover recreational activities or outings, and if not, will theprovider arrange this transportation by some other means?

Does the community provider rely on any specific company for transportationservices? If so, what has been the provider’s experience with this company?




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Residential supportsDifferent providers are equipped and trained to serve different resident needs, so youneed to find a good client-provider match. If the placement is a group home, yourfamily member must be compatible with all those living in that home.

Providers can discharge individuals in accordance with their policies and proceduresif the provider can no longer support that individual, so you and your Support Coordinator would then need to find an alternative placement. Ask any potentialprovider about their discharge procedures and what will happen if there are seriousincompatibilities or unanticipated deficiencies with the placement.

Management historyWhen considering a community provider, its proven record of quality service iscritical. The provider questionnaires ask about the provider’s reputati on, how longthey have been operating, the depth of their financial resources to cope with issuesthat might arise, and especially their established culture of providing quality care.

The DBHDS License Provider Search System is supposed to provide summaryinformation at, http://lpss.dbhds.virginia.gov , but this web service is not currentlyfunctional. Moreover, the site notes that only reports after January 1, 2012, would besummarized. You might ask your Support Coordinator whether there are other waysof getting this information from an objective source.

Staff Direct care staff will provide most of the supports and social environment for yourfamily member. Staff retention allows them to gain experience to handle unusualsituations and training in a variety of procedures, and to become familiar with yourfamily member’s needs and means of communicati ng. A sufficient number of staff isimportant to avoid problems and handle crises if they should arise.

HousingA well-kept house in a decent neighborhood maintains morale and indicates wheremanagement puts its resources. Also, does the house provide for aging in place byhaving, for example, wheelchair accessibility throughout the living space?

Day supportsCurrently in NoVA, the CSBs have been subsidizing day programs for those in thecommunity while NVTC has been paying the full rate. Those transitioning from NVTCinto, for example, the Fairfax-Falls Church CSB area will lose their day program

because the county will not pick up the 25 percent differential for all new dischargesfrom NVTC. The DBHDS is aware of this problem and looking for a solution.

Assistive technologyThere are limitations on budgets for assistive technology, that is, specializedequipment or modifications to equipment specifically for your family member.Therefore, if your family member needs such equipment, you must make prior

http://lpss.dbhds.virginia.gov/







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arrangements to get it. Also, the custom equipment shop at NVTC may no longer beavailable in the community for future repairs or modifications.

Health and safety supervisionThere are several health and safety provisions at NVTC that are unlikely to be

replicated in most community placements. Consider how important these are to yourfamily member.

The many formal levels of oversight at NVTC will be replaced by occasionalinspection visits. Most incidents in community provider facilities are reportedby the provider’s staff themselves, an arrangement that seems to inviteavoidance and under reporting. You should ask the provider for a copy of theirpolicies on reporting incidents. Two awake staff on all shifts helps in manyways: evacuation during a fire for those who are wheelchair bound, someoneto ask if a staff person has a question, reduction of errors in treatment, andmonitoring of each other to deter abuse and neglect. You should ask theprovider about financing to sustain at least two awake staff on all shifts. Canthe provider assure you of two awake staff at all times, or do funding limitspreclude this?

Longevity on the job works to purge those who are unfit and enables staff toaccumulate training and experience, reducing frustration and poor judgment in crisis situations. You should ask prospective providers to tell you what their staff turnover rate is, as well as how long the most experienced staff member on site has been there.

Provider management should encourage all staff to identify and fix problemsrather than ignore or cover them up. In conversations with provider staff, youshould tr y to understand their “culture” with regard to being proactive infinding and engaging problems rather than becoming defensive and offeringexcuses.



ATTACHMENT II

The PROOF Survey Guide, “Family & Consumer Evaluation of Providers and Programs for Persons with ID/DD”

This survey guide was developed to aid guardians and ARs of the Parent-Relative Organization for Oakwood Facilities, Inc., a VOR affiliate in

Kentucky. It is posted on the VOR Web site athttp://www.vor.net/get-help/community-resources/192-community-services-

checklist .

http://www.vor.net/get-help/community-resources/192-community-services-checklist






PROOFParent-Relative Organizationfor Oakwood Facilities, Inc.

____________________________________________________________________________________ P.R.O.O.F President, The Communities at Oakwood, 2441 S. Hwy. 27, Somerset, KY 42501Phone: (606) 677-4068, Fax: (606) 677-4148

Family & Consumer Evaluation of Providers & ProgramsFor Persons with ID/DD

What shoul d I be looking for i n a communi ty based provider and residential program?

November 30, 2007Introduction

In early October PROOF sent a letter to all Oakwood families, parents and guardians about theincreased effort by Bluegrass Oakwood to educate us about community based options. Shown

below are two paragraphs from that letter (underlines added for emphasis).

The purpose of these educational events is 1) to make us more aware, more informed parents, relatives and guardians, 2) to help insure that Oakwood remains in operation and,3) to satisfy the U.S. Department of Justice. Strictly speaking, the goal is education, notto transition our loved ones to a community-based service. Any transition should occur only with the approval of the parent or guardian after a lengthy period of intense scrutinyof available community options.

Some events are designed to educate us about community options. Please be assured thatPROOF is committed to the on-going support and advocacy of Bluegrass OakwoodICF/MR. We see the absolute necessity of the Commonwealth providing Oakwood as achoice for some portion of Kentucky citizens with developmental disabilities. However,as advocates, we should become informed about all available choices.

Sometime in early 2008 the Kentucky Money Follows the Person (MFP) program, KentuckyTransitions, will most likely be approved by CMS. When this occurs, the emphasis ontransitioning to community based services will only increase.

Families, parents and guardians have many things to consider when evaluating competingchoices. Every person viewing a program sees different areas of importance and priority thatdetermine whether that program and provider are acceptable or unacceptable. It is a very

personal choice. We continue to suggest a lengthy period of intense scrutiny. To aid in that process you may want to use these questions as part of your evaluation. PROOF thanks PollySpare, Past President of VOR, for her early work in creating these questions [and Anne

Montgomery, PROOF, for her administrative help]. Thanks to the Council on MentalRetardation, Louisville, KY, for providing help with Section 6.

DisclaimerPROOF, Inc, its members, and its directors do not warrant or guarantee that the use of thisdocument will result in a satisfactory placement for your loved one. The questions are anincomplete list of questions. Please modify, delete and add questions to meet your specific needs.



PROOF Family & Consumer Evaluation of Providers & ProgramsFor Persons with ID/DD

November 30, 2007 2

General Suggestions1. Visit the home or facility in pairs, one to question and take notes, and one to observe.2. Schedule one or more visits for times when the current clients are there.3. Request another visit if you don’t get to see everything.

4.

When you leave, compare notes and impressions with your partner.5. Keep in mind that what you see is usually the best of the program.6. DO NOT SIGN ANY AGREEMENT TO MOVE YOUR FAMILY MEMBER until 1)

you have allowed yourself ample time to investigate the new placement and, 2) all your questions have been answered to your satisfaction and, 3) you have in writing and fullyunderstand the transition process including any right you may have to change your mind.

7. PRIOR TO SIGNING ANY AGREEMENT TO MOVE YOUR FAMILY MEMBER,you may wish to consult with a lawyer concerning the legal rights of your loved one.

8. See Section 13 – Words of Caution for Parents & Guardians.

Section 1 – The Provider Personal Notes & Observations1-1 Provider Corporate Headquarters -

Name, Address & Phone # ?1-2 Provider Local Headquarters - Name,Address, Phone #, Contact Person Name &Title?1-3 What is the type of provider organization – for-profit corporation, not-for-

profit organization, partnership, sole proprietorship, etc.1-4 How long has the provider been in

business in Kentucky?1-5 In which cities does the provider havehomes and how many homes does it have ineach city?1-6 How many provider homes are in thesame neighborhood or subdivision as the homeyou are considering?1-7 Does the provider have a currentlicense? If yes, for how many homes andclients? Has it ever been revoked or suspended?1-8 What is the length of the currentcertification in months?1-9 Please provide the dates and thenumber of discrepancies for the past threeCHFS inspections.1-10 Who (besides the provider) inspectsindividual homes? How often?




November 30, 2007 3

Section 2 – The Home Personal Notes & Observations2-1 What is the address (street, city, state& Zip) and phone # at the home?2-2 What is the name, title and phone #

for the primary parent contact(s) at the home?2-3 What is the distance from this hometo my home?2-4 How easy is it to get to the home?2-5 Is the home rented, leased or owned

by the provider? If leased for what period of time?2-6 What happens when the lease is up?2-7 If rented or leased are there plans to

purchase?2-8 How does a monthly rent/lease

increase affect the client charges?2-9 Is the home all on one floor level? If not explain.2-10 How many clients and bedrooms?2-11 Does the provider ever place two or more clients in a bedroom?2-12 How many bathrooms?2-13 Are there safety rails in the

bathroom?2-14 Is the hot water temperaturecontrolled at a safe level? What is the hotwater temperature?2-15 Is the home well constructed?2-16 What year was it built?2-17 Does it have smoke alarms? If yes,where?2-18 Does it have a fenced yard front and

back?2-19 Is it centrally air conditioned andheated?2-20 What types of door locks are used?Can they be unlocked without a key?2-21 Are there screens in the windows?2-22 Are there two or more outside exits?2-23 Is the home comparable to other homes in the area?2-24 Is the outside of the home attractiveand in good repair?




November 30, 2007 4

Section 2 – The Home (continued) Personal Notes & Observations2-25 When you enter the home how does itsmell?2-26 How would you describe the

appearance of the home on the inside – clean,fresh paint, good furniture, etc.?2-27 As you observed the home, in your opinion, would the home meet state and localstandards for health and safety?2-28 Who is responsible for home repairs?2-29 Are any ramps in place?2-30 Is there a clothes washer and dryer inthe home?2-31 Is it coin operated? If yes, who pays?2-32 Who does the laundry for the client if

they can’t do it?2-33 If staff does the laundry have they

been trained to properly care for clothing?2-34 Who is responsible for cleaning thehome?2-35 How often and by whom is the homeinspected for cleanliness?2-36 What other home inspections andoversight does the provider regularly use toinsure the proper operation of the home?2-37 Are all medications kept locked?

Please describe.2-38 Are all cleaning supplies and bleacheskept locked? Please describe.2-39 How far does the client travel tohis/her day program central point?2-40 On average how many miles does theclient generally travel during the week for outings, recreation, work, activities, etc.2-41 How far does the client travel to see adoctor? Please indicate for each specialistnormally seen by the prospective client.2-42 How far is it from the home to thehospital or hospitals used by the provider?2-43 How far does the client travel tohis/her church?2-44 How is the residential programfunded? Please describe.




November 30, 2007 5

Section 2 – The Home (continued) Personal Notes & Observations2-45 What is the per diem charge? Is any of this charge currently subsidized by the

provider? If yes, please explain.

2-46 Who monitors the residential program?2-47 How often do they monitor?2-48 Are written reports filed by themonitors?2-49 Who receives these reports?2-50 Are all reports such as monitoring,accidents, evaluations, available to parentsand legal guardians?

Section 3 – The Staff Personal Notes & Observations3-1 What are the educational and other qualifications necessary to be hired as a DirectSupport Professional (DSP)?3-2 How is the DSP trained initially uponhiring? Describe the type and length of alltraining.3-3 What areas/topics are covered intraining?3-4 Is there a structured plan for continuedtraining?3-5 Please describe the typicaladvancement path for the DSP.3-6 Please describe the employment

benefit package for the home DSP.3-7 How many staff members are presentin the home for each shift (1-3)?3-8 Is a Supervisor onsite? Whether onsiteor not, how many homes is the Supervisor incharge of?3-9 How many hours per day and hours

per week does the staff work usually? Inspecial situations?3-10 Is the home staff ever allowed to sleepwhile on duty?3-11 Is the staff allowed to smoke or useother tobacco products in the home?




November 30, 2007 6

Section 3 – The Staff (continued) Personal Notes & Observations3-12 Is the staff allowed to take clients fromtheir home on outings without prior approvalfrom the provider and/or guardian?

3-13 What is the client/staff ratio for eachshift (1-3)?3-14 What is the staffing plan for each shiftduring the weekends?3-15 What is the staffing plan for each shiftduring the holidays?3-16 Does this overall staffing arrangementagree with the pros pective client’s pre -

placement plan? [Note: Be sure you have awritten plan that describes staffing prior to anytransition placement.]

3-17 What is the length of service for eachDSP now working full time or part time in thehome where my family member will live?3-18 Does the provider staffing policiesallow for the use in the home of temporarystaff from a pool?3-19 What is the length of time each DSPhas worked in the home where my familymember will live? Continuity is a concern.3-20 What percent of the provider DSP staff has a length of service of 12 months or more,18 months or more?3-21 What is the average tenure of DSPstaff for this provider?3-22 Is the home staff made aware of special diets?3-23 What type of training are they givenin preparing special diets?3-24 How is the home staff trained tohandle seizures? What procedures are used?3-25 How is the home staff trained tohandle behavior problems? What proceduresare used?3-26 How is the home staff trained in theadministration of medication? What

procedures are used?3-27 If only one person is on duty when aclient becomes ill or ―acts out‖, how are theother clients supervised until help arrives?




November 30, 2007 7

Section 4 – Other Clients Personal Notes & Observations4-1 What ages are the clients?4-2 Is the age range compatible?4-3 Are the other clients all male or all

female?4-4 Are there any clients with specialneeds present – blind, deaf, non-ambulatory,etc?4-5 What special provisions were made for these special needs?4-6 When you observed the clients, howdid they interact with each other?

Section 5 – Medical Services Personal Notes & Observations

5-1 Who administers medication?5-2 What qualifications are required to dothis?5-3 How is this monitored?5-4 Who does the monitoring? Howfrequently?5-5 Is the staff trained in C.P.R.?5-6 Is the staff trained in First Aid?5-7 Is the staff trained in special therapies?5-8 What experience do the provider selected hospitals have with persons withID/DD as admitted inpatients?5-9 Which doctors, specialists(neurologists, podiatrists, orthopedic,surgeons) and dentists are used to providecare?5-10 Who pays for services rendered thatare not covered by Medicaid?5-11 How often are clients given medical,dental, and vision checkups?5-12 In case of an illness, is staff availableat the home to care for the client?5-13 Who provides convalescent servicesafter surgery or illness?5-14 If a client is hospitalized do you

provide staff to stay in the room 24/7?5-15 How do you handle medicalemergencies?




November 30, 2007 8

Section 5 – Medical Services (continued) Personal Notes & Observations5-16 After sedation for medical

procedure/treatment as an out-patient, are theclients taken home or to the day program? If

to the day program, are beds available for clients to recuperate?5-17 Is staff encouraged to call 911 in thecase of an emergency? Is a written policyregarding calling 911? Ask for a copy.

Section 6 – The Program Personal Notes & Observations6-1 What are the relevant resources closeto the program and are those resources utilized

by clients?6-2 Does the program/service fit well into

the neighborhood or is it out of place?6-3 Do staff members in the programrepresent a positive image to the communityand treat clients respectfully?6-4 Do clients have an opportunity tointeract with non-disabled people in thecommunity?6-5 Is the program facility age appropriatefor the client?

6-6 Are the cl ient’s personal appearances

appropriate?6-7 Are daily activities and routinesappropriate for the age of the client?

6-8 Are clients addressed in ageappropriate language?

6-9 Do clients have age appropriate possessions?6-10 Does the program staff appear to bewell trained? Is the training consistent acrossall program staff?6-11 Does the program content appear to beappropriate for the student ’s level of understanding?6-12 How intense is the program beingoffered? I s it relevant to the client’s need, andhow much time is spent in the activity?




November 30, 2007 9

Section 6 – The Program (continued) Personal Notes & Observations6-13 Is the program space pleasant andappealing to spend time, is it safe for clientsand is it comfortable?

6-14 Are the unique needs of clientsrecognized and are programs/servicesindividually directed?6-15 What is the quality of interactions

between clients and staff, staff and staff,clients and clients, and does staff encourageand develop adaptive and appropriateinteractions?6-16 Does the program use services that areutilized typically by the general population(doctors, recreation programs, outpatient

centers, adult education programs,transportation services, churches, etc.)?6-17 Are consumers (clients and their families) and the public involved in theorganization serving the client? For example,

parents and/or consumers on the board or committees, advisory roles, etc.6-18 Is the program or service innovative?6-19 Does the program have any workingrelationships with local or regional collegesand universities?

6-20 Does the program make an effort toeducation the public about ID/DD issuesand/or the needs of children and adults withID/DD?6-21 How is the program licensed? Is it anICF/MR, waiver program, or solely statefunded?6-22 If the home is licensed as an ICF/MR does the provider have a history of convertingICF/MR homes to waiver homes?6-23 What are the funding sources for the

program?6-24 Is there more than one source of funding?6-25 What happens to the client, if fundingis cut back?




November 30, 2007 10

Section 6 – The Program (continued) Personal Notes & Observations6-26 What indoor and outdoor recreationalactivities are available? Are clients offeredchoices?

6-27 Does the program have adequatetransportation available for all programactivities?6-28 If one client is restricted due to illnessor behavioral issues will the other clients bedenied the opportunity to participate in

programs or recreational activities?6-29 If one client is restricted due to illnessor behavioral issues, or just doesn’t want togo, will the other clients be denied theopportunity to attend church?

6-30 How often are ―special‖ activities planned? Who pays for the activities?6-31 How are clients transported?

6-32 How much supervision is provided?

Section 7 – Money & Allowances Personal Notes & Observations7-1 How are client funds handled?7-2 What financial reporting do parentsreceive? How often are reports provided?7-3 Who is the payee for governmentfunds paid on behalf of the client?7-4 Please describe the financial reportingrequired of parents or guardians in your system of care?7-5 Who buys clothing for the client?7-6 Who buys personal care items for theclient?7-7 What is the amount of the allowancefor incidentals provided for the client?

7-8 Who decides what this amount should be?7-9 Who pays the allowance? (Suggestion

– you negotiate a proper allowance amount?)





Section 8 – Client Training & Employment Personal Notes & Observations8-1 Will the day program involve job/skilltraining and/or employment?8-2 What percentage of clients is

employed in the community?8-3 Do all clients who are capable of employment in the community have jobs? If not, why not?8-4 What options are available for theclient in the area of job/skill training?8-5 Is the client or the legal guardianinvolved in the choice of training andemployment?8-6 Did you visit both the day andresidential program?

8-7 Is the work compatible with what myfamily member has been doing?8-8 Is it compatible with my familymember’s abilities and skill level? 8-9 How long is the work day?8-10 What breaks are planned?8-11 What are the pay goals? How is paycalculated?8-12 What is the workplace ratio of staff toclients?8-13 What is the overall goal for the work

effort – supported work, independence, etc?

8-14 Do you agree with the goals?8-15 How often are these goals reviewed?8-16 Did the provider conduct any testing

prior to accepting your family member?

8-17 What were the results? Did you get acopy?





Section 9 - Education Personal Notes & Observations9-1 If your family member is under 21years of age he/she has a right to educationunder federal law.

9-2 What school would he/she attend?9-3 How many students would be in theclassroom?9-4 Is a separate special education option

provided?9-5 Are special education studentsmainstreamed with regular classes?9-6 Is the teacher certified is specialeducation?9-7 How many teachers and aides are inthe classroom daily? Provide a count of each

please.9-8 Does the teacher coordinate planningand training with the residential program?9-9 Are related services offered such asP.T., O.T., and speech therapy?9-10 Who provides transportation to andfrom school?9-11 Who provides meals? Are special dietsobserved?9-12 Is this a 9 or 12 month education

program?

9-13 If 9 months, what happens the other 3months?

Section 10 – Menu & Food Preparation Personal Notes & Observations10-1 How much money is allocated for each individual’s meals per week? 10-2 What is purchased with the food

budget? Is it food only, or are cleaningsupplies, laundry detergent, toilet paper,

paper towels, etc. purchased with that moneyin addition to the food?10-3 How are meals for staff paid for?

10-4 Who prepares the menu? For what period of time — such as weekly or monthly?





Section 10 – Menu & Food Preparation(continued)

Personal Notes & Observations

10-5 What types of special diets areavailable?10-6 Who monitors this process?10-7 Does the provider have a dietician or food consultant?10-8 Who cooks the food? If staff, havethey been trained in cooking/handling food

properly.10-9 Have they been provided recipes for

preparing meals that are indicated on menus?10-10 May I see the menu for the past twoweeks?10-11 How often are frozen meals served?10-12 How often is food from fast foodrestaurants served at meal time?10-13 Did you observe that the food servedin the home was nutritious and well balanced(fresh vegetables, fruit, etc.)?10-14 Is the kitchen equipment adequate?10-15 Is there a dishwasher installed?10-16 Is the food area clean?10-17 Is the menu posted?10-18 Does the food served match the posted

menu? (It is wise to visit at mealtime.)10-19 Are the refrigerator, freezer and pantry adequately stocked?

Section 11 – Admission & DischargePolicies


11-1 For what reason would a client bedischarged from the home (behavior, medical,elopement, reclassification?) 11-2 Who makes the decision ondischarges?11-3 Will the parent or guardian have avoice in the decision?





Section 11 – Admission & DischargePolicies (continued)


11-4 If community living proves to bewrong for my relative, will he/she be allowed

to return to his/her prior placement? Please provide a written statement to that effect, andname the state authority or reference that

backs up your position.11-5 If a client is reclassified, and there isno bed space available, what happens to theclient?11-6 How long can a client be on furloughfrom the home? How often?11-7 May I have a copy of your writtenDue Process policy?

Section 12 – Questions for Parents &Guardians


12-1 After placement, will we be allowedto visit without prior notice? If not, why not?12-2 Prior to placement, will we be allowedto visit without prior notice? If not, why not?12-3 Will I be notified immediately if myfamily member becomes ill, or is injured, or needs hospitalization, or runs away?12-4 Is there a family association thatmeets regularly? Will the provider helpfacilitate the organization of a familyassociation?12-5 Will all services, programs, and funds

be in place and secure before my familymember is moved?12-6 Have you been appointed by the courtas legal guardian? Can you prove it?





Section 13 - Words of Caution for Parents & Guardians

13-1

Get all pertinent information in writing including a pre-placement transition plan.13-2 Ask for copies of all state regulations regarding client rights, parental rights, and due process rights or due procedure rights.13-3 If you are told that something will happen or will be provided, get it in writing prior toaccepting placement. Once enrolled in a program, use annual and semi-annual reviews todocument promises kept and not kept.13-4 After placement, visit on an irregular schedule, unannounced. BE OBSERVANT!13-5 Be cooperative, listen to what is said, but do not agree to anything that seems irregular or may endanger the client’s rights to health, safety, and program.13-6 Don’t sign ANYTHING, particularly room and board contracts, if you are not totallysatisfied. The one exception is the form for emergency medical care. BE SURE that it is aseparate form, not part of any overall release.13-7 You are not responsible for damage to property or liability insurance that protects the

provider.13-8 Be sure you understand how funding is obtained for the program. Is it ICF/MR?Supports for Community Living? 2175 Waiver? Pure state dollars? Today, almost all statesshare costs with the Federal Government to maintain community placements. The cost to theresident will vary according to the type of program. BE SURE you know how much of his/her monthly benefits is assessed for room and board.13-9 If you are considering placement with the provider with whom you conducted thisinterview, take this completed form to the administrator or owner of the program and asked for

his/her signature. Keep this signed document with your records.13-10 Ask to see the current SCL Policy Manual. Spend time reviewing the manual.13-11 Do not be intimidated. Do not allow anyone pressure you into making a decision quickly.



ATTACHMENT III

The Rights of Training Center Residents Under the SettlementAgreement, Federal Law and State Law

This attachment was prepared by the Parents and Associates of NVTC for allof the Training Center family groups in Virginia.



The Rights of Training Center Residents Under the SettlementAgreement, Federal Law and State law

Provided by Training Center Families: Jane Powell for CVTC, [email protected] ;Jane Anthony for NVTC, [email protected] ; Wanda Robinson for SWTC,

[email protected] ; Judy Scott for SVTC, [email protected]

(1) The right of resident choice under the Settlement Agreement . The Agreement providesthe residents, and their Authorized Representatives acting on their behalf, the right to either move into a community placement or remain in a Training Center:

Nothing in this Agreement shall prevent the Commonwealth from closing its TrainingCenters or transferring residents from one Training Center to another, provided that,in accordance with Virginia Code 37.2-837(A)(3), for as long as it remains effective,no resident of a Training Center shall be discharged from a Training Center to asetting other than a Training Center if he or his Authorized Representative chooses tocontinue receiving services in a Training Center.

(2) The right of choice is protected by federal law. The Americans with Disabilities Act(ADA) specifically states that no one can be forced to take a placement they do not desire:“Nothing in this part shall be construed to require an individual with a disability to accept anaccommodation, aid, service, opportunity, or benefit provided under the ADA or this part whichsuch individual chooses not to accept.” 28 CFR §35.130(e)(1)

In interpreting the ADA, the Supreme Court in Olmstead v. L.C . established a 3-part test for when institutionalization is “unjustified” for individuals with disabilities:

(a) “The State’s treatment professionals have determined that community placement isappropriate;

(b) The transfer from institutional care to a less restrictive setting is not opposed bythe affected individual ; and

(c) The placement can be reasonably accommodated, taking into account the resourcesavailable to the State and the needs of others with mental disabilities.” ( emphasisadded ) Olmstead v. L.C., 119 S. Ct. 2176, 2181 (1999).

Virginia, in implementing the Agreement, must also comply with Medicaid law that requires the provision of certain specialized services, including but not limited to health care and “activetreatment,” which is individualized skill-training to allow each individual to function asindependently as possible and not regress in abilities.

(3) The right of choice under Virginia law. Judge Gibney also cited the rights of residents torefuse discharge under Virginia Code 37.2-837(A)(3), “for as long as it remains effective .” TheCode section, which cites federal law as the reason for its existence, remains in effect.

Virginia Administrative Code also affords authorized representatives the right to make their placement decisions free from pressure by the DBHDS or other state employees. It defines“consent ” as: “the voluntary agreement of an individual or that individual's authorizedrepresentative to specific services. Consent must be given freely and without undueinducement, any element of force, fraud, deceit, or duress, or any form of constraint orcoercion. 12 VAC 35-105-115 (emphasis added)



ATTACHMENT IV

The Arc of NoVA Transition Guide, “Community-BasedSupports”

This guide was prepared for us by the Arc of Northern Virginia. It is anextensive 67 page reference document containing a wealth of information and

useful advice.



Community-BasedSupports

Transition planning information and options to assist all individuals inliving safe, healthy and independent lives in their communities

Presented by The Arc of Northern Virginia incollaboration with the Virginia Ability Alliance

Printed Summer 2013



1



2

Table of Contents

The Purpose of this Guide ...............................................................................................................................EXECUTIVE SUMMARY .............................................................................................................................INTRODUCTION ..........................................................................................................................................

What is Community Transition? ................................................................................................................. Why Look at Transition? .............................................................................................................................Tough Questions .........................................................................................................................................Transition Stories ........................................................................................................................................

Tim Finds a Home ..................................................................................................................................Peter’s Smile .........................................................................................................................................RJ Moves Back to the Community .......................................................................................................1

What is the DOJ Settlement? ......................................................................................................................What Does the DOJ Settlement Mean? ...................................................................................................19“Appropriate Supports” ..........................................................................................................................

HOW TO PREPARE FOR TRANSITION .....................................................................................................Who Will Help with Transition? ...............................................................................................................2Regional Support Teams ............................................................................................................................How Do We Make Plans? ...........................................................................................................................Transition Timeline .....................................................................................................................................Person Centered Plans ................................................................................................................................Supports Intensity Scale (SIS) ...................................................................................................................2

Guardianship, Conservatorship, and Authorized Representatives.............................................28Is a Court Appointed Guardian (CAG) the same as an Authorized Representative (AR)? .31Is Guardianship the same as a Will? ........................................................................................................32Guardianship Across State Lines ..............................................................................................................32

WAIVERS ......................................................................................................................................................What is an Intellectual Disability (ID) Waiver? ..................................................................................33ID Waiver Services .....................................................................................................................................Money Follows the Person (MFP) ............................................................................................................38Types of Residential Supports ..................................................................................................................3

Medicaid and Waivers ................................................................................................................................Medicaid and Special Needs Trusts .........................................................................................................42PROVIDERS AND THEIR SERVICES ........................................................................................................

Northern Virginia Service Providers ......................................................................................................45Pre-Tour and Post-Move Processes ........................................................................................................47Provider Checklist ......................................................................................................................................

MICROBOARDS ..........................................................................................................................................



3

What is a Microboard? ...............................................................................................................................Why Use a Microboard? .............................................................................................................................How Do I Learn More about Microboards? ..........................................................................................52

Glossary .........................................................................................................................................................

APPENDIX A- CONTACTS ..........................................................................................................................APPENDIX B- START ...................................................................................................................................APPENDIX C- POST-MOVE MONITORING SCHEDULE ..........................................................................APPENDIX D- LIMITED GUARDIANSHIP/CONSERVATORSHIP AND ALTERNATIVES ...........64APPENDIX E- DIFFERENCES BETWEEN AUTHORIZED REPRESENTATIVES ANDGUARDIANS ...............................................................................................................................................APPENDIX F- COMMUNITY RESOURCE CONSULTANTS .....................................................................



4

The Purpose of this Guide

The purpose of this guide is to provide information on the process of transitioning from apublic Intermediate Care Facility (ICF), like Northern Virginia Training Center, to thecommunity. It is certainly not going to answer every question you may have, but our hopeis to help families obtain basic information as they start planning for their loved ones. If you are a parent or family member who lives out of state or out of the area, pay attention tothe text highlighted in green to read about how your planning process may be slightlydifferent. Also, look for this puzzle piece logo throughout the guide. It willdiscuss how planning may go awry at each stage and what you can do to get things back on track.

We have made every effort to ensure that the information is correct, but we welcome anycorrections or additions you may have. This guide is designed to be helpful, so we wouldlike your ideas on what else you would like to know. Please email corrections or ideas toLucy Beadnell, Director of Advocacy at The Arc of Northern Virginia, at [email protected].

TIP:These blue boxes are usedthroughout the guide to

help provide extrainformation and tips.



5

EXECUTIVE SUMMARY

Transitioning from a training center environment into community-based supports is a bigchange not only for the individuals who move, but also for their families and loved ones.Services in the community involve working with a large number of partners and agencies.

Your loved one ’s entire support team will no longer work for the same agency or work onthe same campus. This guide is meant to help you start figuring out what your loved onewill need, how you can be involved in the transition process, and who else will be involvedin making sure your loved one is safe, happy, and healthy.

No guide can answer every question you have. Each person, each family, each situation is alittle different. However, this guide should help get you started in the right direction. Theguide begins with stories of some individuals who have transitioned so you can start tolearn a little from the experiences of others. We hope to grow this section and would likeyou to share your story with us once your loved one is settled into their new home.

The guide provides an overview of the Department of Justice Settlement with Virginia. It isimportant to understand this settle ment’s intention and provisions since this is what willgovern a lot of the changes Virginia is making to ensure your loved one’s transition issuccessful. From there, explore the “How to Prepare for Transition” section to learn moreabout the individuals who will help plan for your loved one ’s transition and those who willbe involved in long term supports. While working with this team, you’ll get to know thePerson Centered Planning process used in Virginia to plan for support services. As a team,you will conduct comprehensive assessments of the needs for health, safety, and quality of life of the individual moving to find the best new home for them. Before transition iscomplete, you also need to understand the roles of guardians and how legal authoritychanges in a community setting. This section explains guardianship and authorizedrepresentatives.

Your loved one’s support team will likely be using a Medicaid Waiver to fund theircommunity-based services. The Waivers section summarizes the purpose of waivers andthe services offered through waivers. It also discusses the role of Medicaid, financial limits,and a Special Needs Trust to protect benefits and services. Once you have anunderstanding of the services offered under the Waiver, look to the Providers section toexplore who may be able to provide the services your loved one will need. Explore thechecklist to begin thinking about the questions you’ll ask these provide rs to make sure theyare the right fit.

If you feel that yo u would like a bigger support team or you aren’t able to be the leadadvocate for your loved one, consider a “Microboard.” The Microboard section explainshow you can build a circle of support around your loved one to share duties andinformation.

Finally, the guide offers helpful contacts and more detailed information about guardianshipand crisis services.



6

It is our hope that your story and the lessons you learn during transition will be sharedwith us and become a part of this guide in the future. Look for updated editions often in thecoming years.



7

INTRODUCTION

What is Community Transition?Transitioning to community-based supports is the process in which a person with adisability moves from a training center (sometimes called an institution or an Intermediate

Care Facility, ICF/ID) or a nursing home into an integrated community setting to receivesupports. To receive services in a community setting, an individu al “waives” the right toreceive supports in a training center or other ICF/ID, and chooses instead to have servicesfunded through a Medicaid Waiver (see page 33 for more on Waivers). The use of Waivershas grown greatly over the last 40 years, thus allowing the increasingly common process of transitioning to community based supports. More and more individuals have found that though community supports may not have been a viable option for them in the past, the useof Waivers and the growth of the support options available in the community have made it possible for them to transition.

Why Look at Transition?Many families had imagined that their loved oneswould continue to receive supports in a trainingcenter setting for the rest of their lives. The focus inVirginia on transition may leave you wondering, “Wh ytransition?” Here are some of the reasons fortransitioning and the benefits of doing so.

The individuals who leave the training centers duringthe term of the Department of Justice settlement withVirginia (a ten year settlement that started in 2012)

will be able to take advantage of a system designedspecifically to help them transition successfully. Thissystem began development immediately after thesettlement was designed and will continue to evolveover the coming decade (See page 19 for more detailson the settlement.).

Virginia’s Department of Behavioral Health andDevelopmental Services has released a plan to closefour out of five of Virginia’s Training Centers and to reduce the size of the fifth to seventy -five beds. The Northern Virginia Training Center is scheduled to close on June 30, 2015.

Both anecdotal evidence and academic studies have shown that people who successfullymove to high quality, well-planned community-based care experience benefits. We inviteyou to go to the link below and watch the video made by the Department of BehavioralHealth and Developmental Services (DBHDS) in late 2011. It tells the stories of severalpeople who moved to community living after leaving Virginia’s state training centers. Somepeople became more social, had decreases in behaviors, and developed new friendships.

“Michael loves hishome and his

housemates. . . He has become more social

and fed himself for thefirst time! All his

friends applauded andhe was so proud.”

-Cindy Taylor, a momspeaking about her son ’s transition to the

community after leaving a Virginia

training center



8

They all experienced an increase in community involvement and were happy with theirmove. http://www.youtube.com/watch?v=ubHxrwmtVtI&feature=plcp

In 1999, researchers evaluated 38 published studies that examined outcomes associatedwith moving from institutional to community based living. The review found that adaptivebehavior almost always improved in community-care settings. 1 Another review of 11studies indicated that personal care skills, communication skills, social skills, and physicaldevelopment improved significantly in some cases. 2

An additional benefit of moving to a community-based system of care is less measurable,but no less important. Individuals moving to private homes in the community often havetheir own rooms, greater freedom to have walls painted and rooms decorated to meet theirinterests, and have a sense of belonging in a small and homey setting. For individuals whohave never lived in a home setting or have not done so for many years, this can be awonderful opportunity. For those people who have their own private rooms now, thefeeling of a smaller setting can also be beneficial.

Virginia is becoming one of many states to focus on community-based living. Seven states,including the District of Columbia, have no public or private facilities larger than 16 bedsfor people with developmental disabilities. 3 Five other states have no public institutions,and have between 1-11 private facilities with 16 beds or more. 4 Many other states haveclosed at least one large state institution and have also focused on downsizing institutionsin favor of community-based supports to provide opportunities for greater independencefor individuals receiving supports and to realize possible cost savings. This is worth notingsince it shows that in several states, every single person, no matter the significance of theirdisability, is being served in the community.

In Virginia alone, the population of training centers has declined from its peak of about 6,000 residents to 885 residents as of January 2013. 5 By moving to a community supportsmodel, Virginia is working towards a future where all people with disabilities are living asindependently as possible in home settings and are contributing members of theircommunities.

Community-based supports also tend to be more cost-effective than care in state facilities.At a January 2013 hearing at the General Assembly, Commissioner Stewart noted that morecommunity services will need to be increased and that any cost savings from closing

training centers will be put towards additional safeguards and supports in the community1 Kim, S., Larson, S. A., and Larkin K.C. (1999) Behavioral outcomes of deinstitutionalization for people withintellectual disabilities: A review of studies conducted between 1980 and 1999. Policy Research Brief (University of Minnesota: Minneapolis, Institute on Community Integration), page 1.2 Kim, Larson, and Larkin, page 1-2.3 Larkin, Larson, Salmi, and Webster (2010). Residential Services for People with Developmental Disabilities:Status and Trends Through 2009 (p. 34-35)4 Larkin, Larson, Salmi, and Webster, p. 34-35.5 Commissioner Stewart, TACIDD meeting, 6/15/12. Available at www.dbhds.virginia.gov/ODS-TACIDD.htm

http://www.youtube.com/watch?v=ubHxrwmtVtI&feature=plcp



http://www.dbhds.virginia.gov/ODS-TACIDD.htm

http://www.dbhds.virginia.gov/ODS-TACIDD.htm




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mandated by the DOJ Settlement. 6 This is an exciting move as community-based supportswere historically underfunded, a problem that had led to some individuals seeking out training center placements in the past. It is important to understand that Virginia is legallyobligated to fund all of the supports in the settlement, regardless of any cost savingsrealized from closing state training centers.

Lastly, Title II of the Americans with Disabilities Act (ADA) 42 U.S.C. § 12132 and theSupreme Court’s Olmstead v. L.C. decision, 527 U.S. 581 (1999) require that individualsreceive services in the most integrated settingappropriate to their needs. That means that everyone has the right to integrated,community-based supports, no matter howcomplex their needs may be. It should be notedthat these decisions do not allow individuals tobe moved without their consent or the consent of their legal representatives. These doctrinesfocus on working with individuals to help themidentify the right home in the community forsupporting their needs.

In February of 2011, the United StatesDepartment of Justice submitted a findingsletter to the state of Virginia that noted theCommonwealth had failed to provide integratedservices and that the system of transitioningpeople to community-based care must be improved. 7 The result of that letter was a year -

long negotiation and a legal settlement that will improve community supports and assist individuals in transitioning from training centers to their communities.

6 Commissioner Stewart, Sub Committee Hearing presentation “Virginia’s Implementation of The Settlement Agreement with the U.S. Department of Justice, ” 1/11/13.7 DOJ Findings letter, page 1. Available at www.dbhds.virginia.gov/settlement.htm

TIP:If you do not use acomputer at home,

consider going to your local library’s referencedesk for help visiting thewebsites in this guide and

locating other onlineinformation. Some

libraries even offer free printing.

http://www.dbhds.virginia.gov/settlement.htm




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Tough Questions

You may have started reading this guide and thought “Well, I’m glad that transition workedfor someone else, but our situation is different.” It is true that the stories in this guide orthe examples we give may not apply to your situation. Everyone is different and you willlikely experience different hurdles and different benefits during your transition. Thesestories and this guide are here to remind you than transition can be done, it can be donewell, and it has been done well many times before. Your path will be unique, but you arenot alone. Everyone who has ever transitioned was once in a state facility because they hadneeds that could not be met well by their community. The thousands of people who haveleft have done so because the right community placement was available. Even thoughpeople tend to find the right home in the long-term, it is not a simple or quick process.

Many families have expressed concerns about their new responsibilitiesunder a community-based care system. It is fair to say that many familieswho have loved ones in the community work very hard to make sure thesupports that are in place are the best possible. It is also true that somepeople have no living family or only family members who are involved ona very limited basis. These people can also have safe and fulfilling lives.You are a very important member of your loved one’s team, but you are

not expected to know and do everything. Be as involved as you are able to be, and thenwork with the rest of the team to put all of the right pieces together. Recognizing that theremay be a time when no relatives live near a loved one, some families have established aMicroboard to oversee the other parts of the planning and long-term supports (see“Microboards” sec tion for more information).

Now you may be thinking “But what if something goes wrong after we choose a communityplacement ?” The honest answer is that it may. In any setting at any time, something couldhappen to any one of us. That likelihood increases when the person involved is someonevulnerable. Unfortunately, these tragedies can happen with novice and experienced staff,in training centers and in community placements. There is no 100% preventative, but there are many ways to make sure your loved one is as safe as possible. This guide goesinto these topics into more detail. The Department of Justice Settlement mandatesincreased training for staff and support coordinators (also called a case manager),increased oversight in all settings, increased reporting and monitoring, and rapid crisisresponses. When you’re selecting providers, use the checklist in this guide to make surethe person supporting your loved one already has the knowledge, skills, and abilities theywill need. Visit often or have friends, relatives, Microboard members, and your support coordinator do the same. If you suspect anything may be wrong or have any concerns,never hesitate to use the yellow highlighted numbers in the contact section of this guide toget immediate intervention. For information on what to do if a provider or home is not agood fit after a move, look to the puzzle piece logos in the sections on Types of Residential



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Supports and Providers. For tips on finding providers of non-waiver services, see thepuzzle piece logo on page 37.

Knowing that big changes are coming, how can you build trust in those who will care foryour loved one? Real trust never comes instantly, but is built over time with proven

relationships and fulfilled promises. You can start building that trust now with each newprovider and each person involved with supporting your loved one. Here are some of theactions you should consider:

Ask them all the questions you have and share your fears. Ask them to share their experiences with similar concerns. Make sure the answers to your questions are thorough, clear, and are supported by

facts. Ask providers for a list of references from other people they serve. Make sure you know who to call if you have concerns. Ask about options for unannounced visits. Ask your support team, as including the Regional Support Team) to assess barriers

to placement, keeping in mind that these teams are designed to assist you indischarge planning.

Most importantly, trust your instincts and if something does not look or sound right,take a step back and gather more information before proceeding. Lastly, rely onyour support team.

Ask for expert advice. Consider options like privately hired case manager advocatesor Microboards that are addressed in this guide to offer additional assistance andoversight.

For any concerns about abuse, neglect, or exploitation, you should contact Adult ProtectiveServices (see “Contacts”). Some tips on that process are below.

You do not need to be certain of abuse nor of who may have been the perpetrator.APS’s job is to i nvestigate any and all concerns.

You can ask that they keep your name or identifying information out of theinvestigation if you would like.

You may often find that service providers have already called APS and licensingoffices to report any concerns even before you do.

Providers risk their license to operate by not reporting any concerns immediately. Good providers never hesitate to make that call, want to know if there is a problem,

and are thankful for families who help them identify and resolve problems. For tips on finding good providers, visit the Providers and Their Services section.

You can also look online to see past investigations and findings at http://lpss.dbhds.virginia.gov/ .






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Transition Stories

The following stories were generously shared with The Arc of Northern Virginia to include

in this guide. If you would like to include your transition story and advice, please submit it to Lucy Beadnell at [email protected]. Updated stories will appear infuture editions of this guide. If you’re wondering where to turn if your transition is hittingsome roadblocks, look to the puzzle piece logos in the sections on Types of ResidentialSupports and Providers and Their Services.

Tim Finds a HomeShared by Tim’s father

So, you’re expecting a success story… right? After all, it’s unlikely The Arc of NorthernVirginia would be publishing an article about a failure. Well, you’re right; it is a success

story. But nothing is ever that simple. We didn’t make this move on faith alone. Let’s start this story eighteen years ago, when our son Tim moved a mere four miles fromthe Northern Virginia Training Center (NVTC), where he had lived for 15 years, to a brandnew group home in Mantua, a community just outside the City of Fairfax. The ride wasshorter than ten minutes, but it was a major life-changing event for Tim. It was an equallymomentous event for his mother and me.

Perhaps only other parents of children with disabilities can fullyunderstand the depth of the

emotional upheaval prompted byeach transition in their child’s life. For us, the journey began in 1964,when a doctor at the ParisAmerican Hospital explained to mywife Linda and me that our first child, Tim, was not simplydeveloping more slowly than otherone-year-olds but had a profounddisability. Later, we would learn

that the specific diagnosis was Cri-du- chat (cat’s cry) Syndrome, a condition that results

when a piece of chromosome 5 is missing. Our understanding of what this meant evolvedover years. At first we were focused on “what do we do now?” Later, we began to realizethat a more difficult question was what would happen to him when he inevitably left home.We were young. We had no relevant experience. We were overseas with the army with noone to turn to. The doctor’s recommendation was that Tim should be institutionalized assoon as possible. In those days, at least in our minds, doctors and priests were to us theultimate authorities and fonts of all wisdom.

Tim visiting relatives in Arkansas

mailto:[email protected]




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But this is not about our entire experience. It is about his move from NVTC to a grouphome. I am not a foe of NVTC or the concept of Training Centers. In fact, I’m a past -president of the NVTC Parents & Associates, as well as past-president of PAIR Virginia, anorganization which stands for an array of residential options, including keeping theTraining Centers available for those with greater needs for support. Each individual’s

needs are different. In fact, they can be immensely different. It disturbs me when a blanket statement is made that “life in the community” is categorically better for all individualsthan life at the Training Center - a position that has been frequently backed up by studiesthat (like all studies) may reflect preconceived notions of the sponsoring organizationsrather than being based on hard data. That said, I am no longer convinced that grouphomes are categorically unable to provide the level of care required by even the most profoundly disabled residents of the Training Center. Further, as a result of theDepartment of Justice actions, the decision has been made.

As parents, we were quite happy with conditions at NVTC. It had an amazingly professionaland caring staff who were doing an excellent job of meeting the needs of the residents.

But we were also quite aware that sharing a bedroom off of a large activity room did not represent all the comforts of home to which we are accustomed. I recall vividly oneevening after a Parents & Associates’ meeting when I sat on Tim’s small bed in Building 4. Ibecame very emotional as I realized that I could not imagine the idea of this being my ownhome. But we did not know of any better options, and saw the arrangement as a necessityin view of the need to provide the supports required by the population served.

Then, in late 1979, we were faced with a big decision as staff nominated our son as acandidate for moving out into the community. For us, there were a lot of unknowns about his moving into a group home. We had heard horror stories about such places from Voiceof the Retarded 8. We wondered if Tim might end up, for example, in a home on a street corner in a dangerous part of some city. That may make us sound paranoid, but we werewell aware of the fate of people with mental illness who in the 1960s were discharged frominstitutions as a result of well-meaning but underfunded programs, only to find themselveshomeless on the streets of towns and cities across the nation.

We were also concerned about the potential for abuse in a small setting with limited staff.But Linda had worked for Adult Protective Services, and we were aware that no setting isimmune to possible abuse. In fact, Tim had been the victim of physical abuse at NVTC on at least one occasion. Still, we had first-hand knowledge and confidence when it came toNVTC, but no such familiarity with group homes.

Fortuitously, NVTC staff put us in touch with Chimes, a Baltimore-based organizationproviding a wide variety of services for people with disabilities. I’m sure there are manyexcellent providers throughout our area, but as luck would have it, I had personalknowledge of Chimes’ track record. I worked at NISH, a national organization that helpsnon-profit agencies throughout the U.S. obtain federal contracts providing employment opportunities for people with disabilities. I knew that Chimes had an exemplary record of

8 Note: Voice of the Re tarded has since changed their name to “VOR,” dropping the use of the term “retarded.”



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performance in this program, and hadcome to know some of the senior Chimesmanagement personnel. Chimes wasfounded by a group of parents whooriginally provided services in a church

basement. Over the years, theprofessional staff has worked hard tomaintain that original level of devotionand commitment in providing a highquality of life for the population theyserve.

Chimes was in the process of openingtheir first group home in Virginia. Lindaand I were invited to tour their existinghomes in Maryland and Delaware, and

returned home thoroughly convincedthat our son would be better served bymoving to the new home. I should point out that Tim did not require any specialmedical support then or now, but residents of many other Chimes homesdo require - and receive - very specializedcare.

So we made the move, fully expecting Tim to experience some emotional turmoil as headjusted to his new “digs.” Instead, thanks to an excellent transition procedure jointlyestablished by NVTC and Chimes staff, he adjusted immediately. Some of his friends fromNVTC moved in at the same time, so he saw familiar faces. For the first time in many years,he was no longer sharing a bedroom. He was eating in the dining room that looks like anyother dining room in the neighborhood. He was relaxing in the glider on the back deck. Inshort, all of our hopes were met and none of our fears were realized.

He eagerly boards a van five days a week to go to his job at ServiceSource (formerly CentralFairfax Services) in Alexandria. On weekends he usually visits his mom and me at ourhome in Annandale or he participates in activities organized by the group home. He lovescoming to our place to visit with family, but also loves returning to his home on Sundayafternoon to get ready for work the next day.

I’ve had the opportunity to serve on the Chimes, Virginia Board of Directors for severalyears. This has given me a terrific insight into the organization’s v alues and practices. It has also allowed me to see first-hand the planning and attention being given to providingthe necessary supports for an aging and increasingly medically fragile population. Like allparents, Linda and I do not look forward to the day when we are no longer available or ableto play an active role in Tim’s life. But we have confidence that the dedicated professionalstaff will continue to provide him with a good quality of life. To me, that staff - along with

Tim visits the Grand Ole Opry



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the long-standing value system consistently observed by Chimes - represent the “bricksand mortar” that will be there for him.

Chimes is certainly not the only provider of quality services. But my strongrecommendation to families and guardians of individuals moving from the Training

Centers is to actively engage with providers you are considering. Get to know theleadership, ask about their long-range plans, their staff turn-over, and their philosophy.Speak with families of individuals already being served by the provider. Where specializedmedical care is required, ensure they have the means and training to meet your loved one’sneeds.

For Linda and me, the most difficult stage in Tim’s move to a group home was not knowingwhat to expect. Once we saw first-hand group residences that were serving individualswith needs similar to our son’s, we felt much more confident. Based on 18 years of ourexperience so far, that confidence was not misplaced.



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Peter’s Smile Shared by Peter’s sister

I'd like to share a story about my older brother,Peter. He was born in 1948 and he suffered brain

damage from forceps used at delivery, leaving himfunctioning at a 3 year old level. He is non verbal, sohe uses leading gestures to communicate.

Back then, there were no services available forPeter. My parents had no help and our family went into crisis after Peter became aggressive at home.My parents placed him in Lynchburg TrainingCenter in 1965.

After my father’s passing, I encouraged my mother

to transfer Peter to Northern Virginia TrainingCenter so he could be close to home. In 1981 he wasaccepted, and regular home visits started.

I volunteered at the center doing whatever I could,from Co-President of Parents and Associates, to

Ambience Coordinator, to Human Rights Representative, to even mending of clientsclothing.

In 2010, after living in state training centers for 45 years, we were offered a placement in aChimes group home. My siblings and I werescared. I spent many sleepless nights tryingto figure out what to do. My siblings askedwhy I would even consider this. In the longrun, I decided to give Peter a voice.

So, Peter moved into a Chimes home. Now,for the first time, when I put Peter to bed at his home, he rolls over and gives me a smile;I'm sure he is saying thank you for my newlife.



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RJ Moves Back to the CommunityShared by RJ’s sister

My brother, RJ, has had success in transitioning to a congregate care facility from NVTC.Our mother, Amelia, was quite involved in his life and knew a lot of the people and

processes in Northern Virginia. I came to know the same when RJ had a broken jaw inAugust 2008, followed by acute renal failure in January 2009.

Mother had been RJ's guardian, with me as standby, until he moved to NVTC. We thenbecame co-guardians, and I ended up as RJ's guardian as mother's decision making skillshad declined as was evidenced by the broken jaw and acute renal failure. She would voiceher opinion to me, but not take action.

In the midst of the broken jaw and renal failure, I drove up from Atlanta on the phonewith Adult Protective Services and Deb Lochart from Human Rights. I engaged a movingcompany and requested that a representative of the group home where RJ had been living

be available. When I got to the hospital that evening, I had the NG tube and restraintsremoved and prepared my mother to move RJ to hospice. He was either going to feedhimself or perish. Fortunately, NVTC could take RJ as neither our mother nor I was in aposition to take him.

RJ stayed at NVTC, progressively improving, until he moved to the Chimes Pebble Lanehome in June of 2011. I had toured various group homes that January when DeborahBumbaugh and Mark Diorio of NVTC explained that this would be best for RJ. Of all thegroup homes I toured with Jennifer McKinney from the Arlington CSB, Chimes was our best option. They understood the incidents and accidents that occurred at the previous grouphome and were prepared to provide RJ with the supports he would need. It was a smallhome, starting out with just four people. This size home allowed RJ to access the MoneyFollows the Person funding for extra supports, including furniture, as he moved. It alsomeant that RJ would not be near our mother in Arlington. She had been taking taxis toNVTC, but her health was declining. Neither our mother nor I were present when RJmoved. It was probably best for RJ that mother was not present since it allowed him thechance for a fresh start.

On February 28, 2011 one of mother's neighbors called to say that she was on the floor of her home and had been there for at least two days, possibly close to three. I drove up that weekend and made arrangements for rehab, assisted living, and a nursing home for her. InJuly, I took her to see RJ at the Chimes Pebble Lane house for what would be their last visit.Our mother died of congestive heart failure that November. I told RJ of this the Sundayafter it occurred. He hugged me four times during our visit and I understand was in need of extra staff attention for some time afterward. It was one of the few times in his life he didnot ask to go to McDonald's for Diet Coke during that visit.

I am happy to say that RJ has blossomed since mother's death. She would worry him about his fingernails and insist on cutting them on every visit. This activity upset RJ. She wouldthen become upset because he would push her away.



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RJ is still doing beautifully inhis new home. He likes that it is really his home and he hassome independence there. RJ is

happiest in front of the TV withhis TV guide. He did have ahiccupping and constipationincident late last year becausehe was sucking air from thestraw of his drink cup afterhe'd finished his drink, but thehome has figured out how tohandle the issue.

RJ's wants are to go to

McDonald's for a Diet Coke andbowling. It's how he greets me when I first visit him. "McDonald's. Diet Coke." I took himbowling over the holidays. He lit up when I suggested it. I take him to the Bonefish Grillwhen I visit him. We sit in the bar so that he can watch TV. He also likes to go to themovies, but make sure you show him where the bathroom is as he will suck down his drink in short order!

My concern about RJ is a community job placement. He is still in the Skills Training Centerat NVTC in their envelope stuffing/meeting notebook preparation facility. RJ is their topperformer. I want him to have a job in his community, near his home.

RJ has a care manager, Jill Thurber, since I do not live in Northern Virginia. Jill has beenhelping us find a community job placement for RJ. He is on the waiting list at ECHO. Jill andI toured the day programs in the area following the May 2011 fair at NVTC. Jill visits withRJ frequently and takes care of needs that I cannot, such as shopping for clothing. I visit RJonce a quarter.

I am waiting to hear about the appointment of our cousin as RJ's standby guardian just incase something happens to me. Having a good relationship and open communication withthe care manager, the proposed standby guardian, and the group home has made it possible for me to be very involved in RJ’s life and care, even from a great distance. Thereis no substitute for being there in person to tour and select the right home, but so muchelse can be done from anywhere with the right team. RJ’s success is proof of that.

RJ, enjoying a Diet Coke at McDonald’s, with his sister



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What is the DOJ Settlement?In 2008, the Department of Justice began an investigation into the failure of Virginia toprovide adequate avenues for people with disabilitiesin training centers to find and receive supports in thecommunity. The DOJ expanded the scope of their

investigation through 2010. On February 10, 2011 theDepartment of Justice filed a “findings letter” that detailed the violations of the Americans withDisabilities Act and the Supreme Court’s Olmstead v.L.C.decision. 9 At that time, Virginia and theDepartment of Justice entered into a closed doornegotiation on how to settle the complaint without having the matter settled in court. On January 26,2012, the state of Virginia and the DOJ released theirsettlement proposal, herein known as the DOJSettlement. The judge overseeing the settlement signed it provisionally on March 6, 2012 and signed it permanently, with modifications, onAugust 23, 2012, thereby making all of the settlement’s provisions court enforceable . Youcan review updates related to the settlement as well as other settlement documents at www.dbhds.virginia.gov/settlement.htm

What Does the DOJ Settlement Mean?The DOJ settlement includes provisions for people currently living in training centers,nursing homes, and people already living in the community who may or may not beutilizing a Waiver to fund supports. It is a ten year agreement that focuses on ensuringVirginia is no longer in violation of disability rights law. As a person involved in the

transition planning process for someone leaving a training center, the following parts of theagreement may be most relevant to you.

1. The settlement provides 800 “Intellectual Disability Waivers” that allow peoplecurrently in the training centers to move to community-based care. A waiver is adifferent way of funding services than the training center uses. (See Page 33 for moreinformation on ID Waivers)

2. A crisis support system (called START) is included in the settlement. Any adult individual with an intellectual or developmental disability in the community who ishaving a mental health or behavioral crisis can utilize these services 24 hours a day,seven days a week. A mobile crisis team will be expected to reach an individual in anurban area within 1 hour and to reach individuals in rural areas within 2 hours. Thesecrisis teams are already being built. (See APPENDIX B for a list of these teams. Notethat Northern Virginia is Region 2.) With each crisis event, the response team can stayon site with the person in crisis for up to 72 hours. If more supports are needed beyond

9 U.S. DOJ letter February 10, 2011. Available at www.dbhds.virginia.gov/settlement.htm

Olmstead vs. LC In 1999, the SupremeCourt ruled that statesmust place people with

intellectual anddevelopmental disabilitiesin the most integrated andleast restrictive setting that

can meet their needs.










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If you’re working on plans with your team and still feel uneasy or feel likeyour concerns are not being addressed, consider contacting state-levelstaff working on the transition process (see APPENDIX A for these contact

names, numbers, websites, and email addresses). Let them know about your concerns and the hurdles you are facing. They are meant to be aresource for making transition successful. If you have identified barriers

to community placement, the settlement agreement establishes a Regional Support Team(RST) to help resolve these barriers. You and the RST might find a mutually satisfactoryresolution of the barrier.



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HOW TO PREPARE FOR TRANSITION

Who Will Help with Transition?An entire team of professionals (underlined below) will be working with you to plan fortransition, and to follow through and ensure the transition is safe and successful. As a

team, you’ll work to ensure that all of the supports someone needs are in place before themove and the service providers you’ve chosen are well equipped to deliver those supports.You will already know many of the people on this team. It will include the person with adisability, staff members who have worked with your loved one at the training center, thesocial worker and discharge planner at the training center (called the CommunityIntegration Manager), specialists who help support your loved one (e.g. therapists anddoctors), and friends and/or family. Training Center staff are state employees through theDepartment of Behavioral Health and Developmental Services. You should ask that anystaff members who worked with your loved one on aroutine basis and know them well also be included inthe team so they can provide input and advice.

There will also be team members who you may not have worked closely with in the past. This includesyour Community Services Board Support Coordinator(Case Manager), a county employee. In NorthernVirginia, your county will dictate which CommunityServices Board (CSB) you use. For example, if youlive in Fairfax County , you’ll use the Fairfax -FallsChurch CSB. The CSB involved is based upon wherethe individual with a disability was living when he orshe moved into the training center. You may havealready met with this Support Coordinator, but if not,as soon as you start planning for transition theSupport Coordinator will be a part of the process.The Support Coordinator will help you understandwaiver and other community-based living options.The Support Coordinator will also work with the team to line up supports to ensure that the person has everything needed when moving to their new home. If the person with adisability and the support team decide they want to move to a new part of the state, youwill begin working with a Support Coordinator at your destination CSB or its equivalent,too.

Other team members will include residential providers, job support providers, and anyother service providers the person moving to the community will use after transitioning.Your team and Support Coordinator will help you identify, tour, and select these serviceproviders (For a list of Northern Virginia providers and tips on how to find the appropriateprovider for your loved one, see pages 45-50). Your team will receive additional support from the state Department of Behavioral Health and Developmental Services staff includingCommunity Resource Consultants. These Community Resource Consultants (CRCs)

Your Team Will Include:

The person with adisability Parents/guardians

Other interested familymembers

Training Center staff Your CSB Support

Coordinator Providers you select in

the community Other people you think may be helpful



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provide training and technical assistance to CSBs, private providers, family members andindividuals to ensure the best possible decisions are made regarding individuals’ supportsin the community. Your entire team will ensure that the planned move fully supports theperson, keeps them safe, and meets the strict oversight requirements of the settlement.Keep in mind that each team member has a different area of expertise, so you’ll want to

take all opinions into account when you’re planning for a transition.

If you live out of the area or out of the state, you are still an important part of the planningteam. Participate in conference calls and emails as much as possible. Ask to be updatedafter all meetings you are not able to attend. When it comes to selecting a home or a job, it is a very important time for you to be present, if at all possible. Walking into a home or jobplacement will immediately start to give you a feeling about whether or not this optionwould be a good fit. You’ll want to be able to imagine the home and/or job once your lovedone is there regularly and a visit is an important part of that plan.

If you plan to have the individual leaving NVTC come to live near you, make sure you andthe team plan for that move. Services and supports vary from state to state, so you’ll nee dto ensure the new state of residence has the services available that the person with adisability will need. Engage the waiver and service administrators in the destination statein the planning process.

Support Coordinators, Training Center staff, and service providers should allbe willing and able to give you clear information on what they know, what services are available, and what they think may be a good fit for your lovedone. However, they cannot make decisions for you. If you are not able toparticipate in the transition planning process fully or at all, you may want to

get someone involved on your behalf. Consider hiring a private case manager or advocate,like Elder Care Consultants, privately hired case managers listed in APPENDIX A. They canbe involved in touring, surprise visits, and advocating for the needs of your loved one. Theycan help share information with the team about your loved one’s needs. You may also want to explore the idea of a Microboard, a circle of support around your loved one (seeMICROBOARDS section).

Regional Support TeamsIf you’re experiencing barriers with discharge or you’ve selected a placement that is not aWaiver funded home for four or fewer people, your l oved one’s transition plan will go

before the Regional Support Team. The team will be comprised of disability experts in yourregion of the state who will work to determine what the barriers are to discharge and try toresolve them or to ensure that you have been advised of all support options and are surethe new placement you have selected is the most integrated placement possible. Thespecific team members may change over time but will always include: the CommunityIntegration Manager, the Community Resource Consultant, a Licensing Specialist from thestate, a state Human Rights Advocate, a Training Center Social Services representative,someone from the START crisis team, a medical representative from the Training Center



24

and the community, an ID Services Director andSupervisor from a regional CSB, and a DD Waiver CaseManager.

Your case will go before the Regional Support Teambased upon a referral from either the CommunityIntegration Manager at the Training Center or theCommunity Resource Consultant from DBHDS. You mayask for a referral. Reasons for referral include difficultyfinding a placement after looking for three months, arecommendation to move to a home with five or moreresidents, a recommendation to move to another ICF or anursing home, opposition to discharge by the authorizedrepresentative or refusal to participate in dischargeplanning, and lack of agreement on a discharge plan fromthe team members.

The Regional Support Team will review the situation andmake recommendations. They will work with the team tomake sure that all available options have been exploredand evaluated. Their job is to verify that discharge plansare safe, comprehensive, and involve a movement to themost integrated setting. If you have met with theRegional Support Team and still feel that the home youhave selected is the most appropriate choice, you maycontinue with your planned placement.

How Do We Make Plans?The team will focus on the person who will betransitioning. What are his or her needs for health andsafety, wishes, hopes, and preferences? Think as much asyou can about specific things the person requires to bewell supported and the specific things the person likes.Once the team has a good idea of the answers to thosequestions, you ’ll be able to focus the transition processon meeting those needs and wants. It is most important to remember that everyone on the team should befocused on the person at all times, not making plans

based upon their own wishes or convenience.

Work with your team, especially your Support Coordinator, to understand the optionsavailable where your loved one will be living and working. You will have the opportunityto tour all of the providers who will be able to serve your loved one and then you canchoose which provider you think will be the best match. If the team feels at any time that

Thinking about Needsand Wants

You may already have a

lot of information about a person’s physical and behavioral support needs.

Make sure thisinformation is included in

transition planning, butdon’t forget about wants.

When planning for community providers,think about the specialthings that may matter.

What would make the newhouse feel like “home?”

Living with a friend from NVTC? A yard?

A roommate from thetraining center?

Having a pet? Being near a store or

ice cream shop? Having certain

experiences (e.g.visiting a landmark)?

A caregiver that likesthe same things they

do?



25

the provider is not going to work out, you can change providers while planning. If the teammakes this decision after someone has already moved out of the training center, you stillhave the option to explore and select new providers. You will be able to review onlineprofiles of providers with your support coordinator and you’ll sign off on these profiles asyou select options.

It is also a good idea to talk with families who have transitioned out of the training centerand families who work with the provid ers you’ve selected. These families havevolunteered to share their expertise and experience. For some ideas, see APPENDIX A at the end of this guide. Use their experiences to find out what worked best for their lovedones and how services may best support your family member ’s needs.

Keep in mind that the settlement agreement takes place over 10 yearsbecause the state and Department of Justice recognize that there are not enough services in the community for everyone to leave training centerstoday. However, capacity is already being developed and will continue tobuild over the settlement and beyond. If the specific provider or service youwant is not available today, your team will work to make sure it is available

when your loved one is ready to transition. No one is required to transition until all neededservices and supports are in place.

This process may feel new, perhaps even overwhelming and frightening since so much ischanging for your loved one. Never stop talking to your team and asking questions. It istime to stop and re-examine your plans for a move if: you’re considering service providerswho are not yet able to provide all the services your loved one will need, if not all healthand safety concerns are being addressed, or if any questions you have about meaningful

quality of life (e.g. the ability to take vacations) are not being addressed. If you feel you maybe in one of these situations, take your concern back to your personal support team to re-evaluate your options and plans.

Transition TimelineThe following sample timeline was developed by the Department of Behavioral Health andDevelopmental Services to help explain the sequence of events leading up to transition. It is an overview of a multi-faceted process that will be adjusted for each individual.



26

Week 1 The personal support team (PST), also known as the interdisciplinary team,will hold a pre-move planning meeting to identify the services and supportsneeded for successful living outside of NVTC consistent with the choice of theindividual and his/her authorized representative (AR). Based on this meeting,a discharge plan is developed/revised that identifies all of the

essential/health and safety support needs of the individual, the equipment the individual will require, the training the provider will receive regarding theindividual’s specific support needs, and outlines a specific plan for transition.

Week 2 Based on Personal Support Team discussion, and feedback fromindividuals/ARs and CSBs who have explored potential providers, providersare identified for the individual and AR to visit.

Weeks 3-5 The individual and AR will tour potential provider homes and employment orday supports.Potential providers will go to the training center to observe individual and thestaff at the training center.

Week 6 The individual and AR will identify a potential home based on optionsexplored and input from the PST. A provider pre-move planning meeting willbe held with the PST and the provider to share information and confirmadditional visits.

Week 7 Individual will complete a day visit to the home and supportedemployment/day support provider with assistance from training center staff.

Week 8 Individual, with assistance from training center staff, will visit the homeduring the evening. The Training Center will provide individualized trainingto the potential provider during this time period.

Week 9 The individual will visit the home for a weekend and overnight experience.Week 10 Individual and AR will confirm choice of new home and supported

employment/day activity, and the PST will participate in a final pre-moveplanning meeting.

Week 11 Individual prepares to move.Week 12 Individual moves to his/her new home.

Person Centered PlansTogether, the support team will develop a Person Centered Plan (PCP) that includesinformation about the person with a disability, their health and safety needs, strengths,talents, and wishes. This plan also outlines specific outcomes you’d like to see in place asthe person transitions and in the future. The plan can be updated at any time and it must be updated at least annually. You can use the PCP as a tool to help you describe everythingthat is important to and for the person and to envision how the person’s needs and wisheswill be accommodated.

Supports Intensity Scale (SIS)If you haven’t already, you will complete a SIS before your loved one moves to thecommunity. The SIS is a survey profiling the supports a person needs to be safe andsuccessful in daily tasks and other life areas. The SIS will be done at least every three yearsand updated more often if the person ’s needs change. The support needs identified in the



27

SIS will be integrated into the Person Centered Plan. The needs identified must then befully addressed in the plan. Make sure any support needs are noted in the SIS andunderstood by the support team.



28

Guardianship, Conservatorship, and Authorized Representatives

Guardianship or conservatorship is a legal, court-ordered relationship in which oneindividual is appointed by the court to become the substitute decision maker for another. If

you are the legal guardian/conservator for someone, you have gone to court and had ajudge sign a guardianship/conservatorship order. If you aresomeone’s guardian or conservator, locate the appointment orderand you can identify these items:

The name of the city or county where the order wascreated

The name of the person with a disability and a statement clarifying that they are “incapacitated” and unable to makedecisions independently

The name of the guardian who is appointed

The legal rights given to the guardian Signature of a judge and date for the order

What does it mean to be a guardian/conservator?

If you are a guardian and/or conservator, you are the legallyappointed authority to make all decisions on behalf of anotherperson. This is the most restrictive form of limiting legal rights,restricting all legal decisions that arise in the life of theincapacitated person.

Guardian of the person : If the decision maker isappointed by the court to become a guardian of theperson , that person is responsible for the personal affairsof that person, including decisions regarding the person’ssupport, care, health, safety, habilitation, education,therapeutic treatment, and residential care, unless the court order specifiesotherwise. This person has the authority to review medical records

Conservator: If the decision maker is appointed by the court to become aconservator for a person who has been deemed incapable of making financialdecisions for themselves, that decision maker is responsible for managing theperson’s estate and/or financial affairs as specified in the court order.

Do I need to be guardian and conservator?The short answer is “no.” Because someone needs a guardian, they may not necessarilyneed a conservator and vice versa. You would need to be the legal guardian if someoneneeded help making decisions about care, health, safety, and other supports. You wouldneed to be conservator if someone needs assistance with all financial decisions and youaren’t managing their finances in another way. For example, if someone’s sole income

TIP:All people are

assumed to havelegal authority

once they turn 18,so you must get a

court order to

become guardian if someone’sdisability hassignificantly

impaired their ability to make safe

decisions. As a parent of a child

over 18, you do nothave legal

authority unlessyou’ve put it into

place.



29

comes from Social Security and you are the Representative Payee (meaning you areappointed by Social Security as the person who is allowed to access and disperse that money), you may not want to seek conservatorship since you already have legal controlover all assets. However, if there are significant assets outside of Social Security income,conservatorship may be worth pursuing to ensure those assets are protected and well

managed. In this situation, you would also want to explore a Special Needs Trust (see page42) to ensu re that the person’s benefits aren’t adversely affected by the assets in theirname. Always talk to a lawyer about your particular situation to get expert advice if youhave concerns.

What are the limited options that are less restrictive? It’s importan t to note that without a court order specifying limited areas of need in aguardianship and/or conservatorship order, all legal rights are taken away from theindividual. However, you can have a guardianship or conservatorship order that is limitedin scope, thereby preserving some named rights. You can also look into alternatives toguardianship that give you control over just medical or other types of decisions. You can

explore alternatives to conservatorship like becoming Financial Power of Attorney. For afull list of alternatives, see APPENDIX D.

How to Get Started First, examine the benefits and limits of guardianship, conservatorship, and the lessrestrictive alternatives. Make a decision on the best option for your loved one. Then,contact an attorney with expertise in the field of elder or disability law. See APPENDIX A at the end of this guide for a list of attorneys in the Northern Virginia area who may be able tohelp.

Tips on Guardianship and Conservatorship

You may want to consider appointing a standby guardian/conservator in your order. Thisperson would not have legal authority until the primary guardian(s) passed away or wereno longer able to serve as declared by a court. At that time, the standby representativewould step in and have full legal authority for30 days in the event of a triggering crisis (e.g. mental incapacitation of the current guardianor death of the guardian), thereby allowing them time to petition the court and makethemselves the permanent guardian/conservator. 10

Some families appoint co-guardians and/or co-conservators. Often the co-representative isa sibling or same aged peer as the person with a disability. This way, when the parent passes away, someone else is immediately able to serve in full legal capacity without

10 § 16.1-351



30

returning to court.

It is easier to add in more legal authority later than it is to take away authority. Forexample, it is much easier to start off as medical power of attorney and later becomeguardian than it is to start off as full guardian and later try to become just medical power of attorney. This is because when a guardian or conservator is appointed to serve, the personwith a disability is deemed incapacitated. If you later want to return some legal authorityto the person with a disability, you would have to show that they had regained capacity.

Because all of these protections are legal actions, they require the time of a lawyer whichcan be expensive. You will pay by the hour for any assistance, and orders that do not require time in front of a judge (e.g. Power of Attorney) typically are much less expensive

as you will require less of a lawyer’s time. When you are ready to become the legaldecision making authority, call several lawyers to get cost estimates. Ask about payment plans or other ways to make the process fit with your budget. If your family is at 200% of the poverty level or lower, Legal Services of Northern Virginia (703-778-6800 orwww.lsnv.org) may be able to take your case for free.

After being appointed as guardian, you will need to get a bond. This bond is a way of guaranteeing to the court that you will be an honorable guardian and will fulfill your duties

http://www.lsnv.org/




31

with the best interests of the individual with a disability in mind. The bond amount isnormally calculated based upon the assets and income of the person with a disability. Youwill be asked to work with a bond company and put up a portion of that amount as aguarantee. Your credit may be checked during this process. If you do not think you will beable to afford a bond, talk with the lawyer who is getting you appointed as guardian to see

if the fee can be waived. You are not fully appointed as guardian until you’re also bonded. Is a Court Appointed Guardian (CAG) the same as an Authorized Representative(AR)?

The short answer is “no.” Authorized Representatives are individuals appointed by thedirector of a training center to review a resident’s condition and act on their behalf inmaking treatment decisions. The code of Virginia and the settlement agreement reiteratethe precedence order of who can be an authorized representative. Guardians have a muchbroader authority to act. For a brief outline of the differences, please see below and for fulldetails see APPENDIX E. If you’re currently not a guardian and think that you want to

become guardian, it is a good time to talk to a qualified attorney about starting that process(For a list of attorneys in Northern Virginia, see APPENDIX A). Once your loved one leavesthe training center and moves to a community placement, you will need some form of legal authority (e.g. guardianship) to continue to be the legal decision maker.

Issue/Situation AR/LAR HasAuthority to

Act

CAG HasAuthority to

ActHIPAA Consent – DBHDS Environment(Health Insurance Portability & Accountability Act of 1966)HIPAA Consent – Community Environment (non-DBHDS) √

Once in Community, the Client can refuse services or “walkaway” to the client’s detriment. Once in Community, the Client can choose to let someone exploitthem (APS can be called but, depending on the circumstances,the person can still refuse services)Once in Community, the Client can choose to move from their residential placement to another State

√

Contractual Obligations: ability to sign on behalf of Client in non-DBHDS settingsEmergency Room Treatment Authorization Needed in non-DBHDS facility

√

Legal Duty to serve in Client’s best interest (and unable to walkaway unless the Court approves)

√

*Virginia Public Guardian & Conservator Program – Guidance Document (March 2012)



32

Is Guardianship the same as a Will?No, it is not. If you have made plans or stipulationsin your will for how you want a person to besupported after your passing, this does not havethe same legal authority as guardianship. You may

want to consider a co-guardian or standbyguardian to act after your death. Also, see thesection on Medicaid and the Special Needs Trust forfurther details on how leaving money or otherassets in a will to a person with a disability mayaffect their support benefits.

Guardianship Across State Lines

Guardianship laws vary from state to state. There

is a movement to make all guardianship ordersuniversally written and acknowledged, but that hasnot happened yet. This means that a guardianship order is only valid in the state in which it was written . For example, if you become the appointed guardian for someone who lives inVirginia, but that person later moves to Maryland, your order may not be recognized inMaryland unless you go back to court there to amend your order of appointment.

You will need to be appointed guardian in the state where the person with a disabilityresides. They can move anywhere within that state and your order and authority are stillvalid. If you move out of state, but your loved one stays in the state where guardianshipwas established, your order is still valid. However, you may want to consider another

guardian or co-guardian who is nearby so they can be close in the event of an emergency orto visit the person regularly. If this is not possible, ensure that you have a way to get signatures provided quickly to the person with a disability in case consent is needed. Youcould do this via fax, for example.

TIP: If you can’t serve as guardian and don’t know anyone who can, ask your team about a privately funded guardian, a volunteer guardian, or a publicguardian. Any professional associated with the individual who requires aguardian/conservator (e.g. case worker, social worker, attorney, therapist,etc.) can make a referral to the public guardianship program in Virginia by

contacting Cynthia Smith at DHBDS at (804) 786-0946 or [email protected] in order to place that individual on the

state waiting list.

TIP:Make sure your will, a

Special Needs Trust, andother legal documents areupdated as needed. The

people you name in thosedocuments should still bewilling and able to serve

in the roles you named for them and they should beaware that they will be

asked to do so.





33

WAIVERS

What is an Intellectual Disability (ID) Waiver?

Decades ago, nearly the only way for a person with a disability to access state supports wasto move to a state training center. In Virginia, the population of state training centerspeaked at around 6,000 individuals, but has been steadily decreasing since then asindividuals have transitioned to community supports, fewer families chose the trainingcenters to provide supports, and the state has strongly discouraged admissions to trainingcenters. As of 2012, the population of training center residents had dropped more than42% since the year 2000. 11

One of the reasons people have been able to look outside of training centers for thesupports they need is the creation of the state waiver system in 1990. For someone toqualify for a waiver, they have to show adequate need on a “Level of Functioning Survey,” atest that scores someone’s ability to complete certain tasks with and without assistance.Qualifying for a waiver based upon this survey requires that someone meet the level of need for an Intermediate Care Facility (ICF), the same criteria required for training centeradmission. However, that person can choose to receive those supports in the communityinstead by using a waiver to fund services. Medicaid funds all waivers in Virginia, soanyone with a waiver also must have Medicaid. (For more on waivers, seehttp://dmasva.dmas.virginia.gov/Content_pgs/ltc-wvr.aspx )

People leaving the training center will be able to utilize an Intellectual Disability or IDWaiver (formerly called the Mental Retardation/MR Waiver). This waiver funds a variety

of services tailored to the needs of the individual. The list of services and definitions forthese services are taken from the Department of Behavioral Health and DevelopmentalServices. 12 Someone using a waiver can imagine these services like a menu. They willwork with their support team to determine which services they need now, but most peopleprobably won’t need every single service the waiver offers. However, if someone’ssituation or preferences change, they can adjust their waiver supports at any time to accessnew waiver services, increase or decrease service hours, or cease using services they nolonger want or need.

In early 2013, Virginia’s Department of Behavioral Health and Developmental Services put out a request for proposals for a firm to re-design the current ID Waiver, as well as the DD

(Individual and Family Developmental Disabilities Support) Waiver. 13 That firm will behired in the summer of 2013 and will begin with a rate study to gather data on the true cost

11 William Hazel’s presentation to Senate Finance Committee on January 31, 2012. Available at http://sfc.virginia.gov/pdf/committee_meeting_presentations/2012/013112_Hazel_DOJ_Presentation.pdf 12 Medicaid Waiver “Just the Facts,” Pages 5 -8. Available at http://www.dbhds.virginia.gov/documents/ODS/OMR-MR-WaiverGenInfo.pdf 13 To view the proposal, visit http://www.dbhds.virginia.gov/documents/AdminBusiness/720C-04357-13R%20RFP.pdf

http://dmasva.dmas.virginia.gov/Content_pgs/ltc-wvr.aspx


http://sfc.virginia.gov/pdf/committee_meeting_presentations/2012/013112_Hazel_DOJ_Presentation.pdf

http://www.dbhds.virginia.gov/documents/ODS/OMR-MR-WaiverGenInfo.pdf

http://www.dbhds.virginia.gov/documents/AdminBusiness/720C-04357-13R%20RFP.pdf






http://www.dbhds.virginia.gov/documents/ODS/OMR-MR-WaiverGenInfo.pdf

http://sfc.virginia.gov/pdf/committee_meeting_presentations/2012/013112_Hazel_DOJ_Presentation.pdf




34

of providing waiver services. The firm will also examine how to provide more flexibility inutilizing the waiver, as well as how more services can be added to address the support needs of individuals with complex medical and behavioral needs. These new plans shouldbe available to the Centers for Medicare and Medicaid Services and the public by April 1,2014 and should be implemented beginning July 1, 2014. Thus, it is important to keep in

mind that this section talks about the ID Waiver as it exists now, but there should bepositive changes to the waiver in the near future.

Keep in mind that while all states have some version of the waiver system, each stateadministers waivers differently. Some states have different names for the waiver, different eligibility criteria, and a different menu of services. If you’re planning f or your loved one tomove out of Virginia to receive services when leaving the training center, work with yourplanning team to contact community-based services authorities in the destination state tolearn how services and supports would be offered.

ID Waiver Services

Assistive technology :Specialized medical equipment, supplies, devices, controls, and appliances not availableunder the State Plan for Medical Assistance, which enable individuals to increase theirabilities to perform activities of daily living (ADLs), or to perceive, control, or communicatewithin the environment in which they live. This also includes items necessary for lifesupport, ancillary services, and equipment necessary for the proper functioning of suchitems.

Companion Care:

Agency or Consumer-Directed non-medical care, socialization or support to adults (age 18and older) in an individual’s home or at various locations in the community. Consumer -directed services offer the individual or family the option of hiring workers directly, ratherthan using traditional agency staff.

Crisis stabilization :Direct intervention (and may include one-to-one supervision) to a person with anintellectual disability who is experiencing serious psychiatric or behavioral problemswhich jeopardize his/her current community living situation. The goal is to avoidemergency psychiatric hospitalization or institutional admission or other out-of-homeplacement, as well as to stabilize the individual and strengthen the current living situation

so the individual can be maintained during and beyond the crisis period.

Day support :Skill building or supports for the acquisition, retention, or improvement of self-help,socialization, community integration and adaptive skills. Day support providesopportunities for peer interactions, community integration and enhancement of socialnetworks. Supports may be provided to ensure an individual’s health and safety.



35

Environmental modifications :Physical adaptations to an individual’s home or community residen ce, vehicle, and, in someinstances, a workplace, when the modification exceeds the reasonable accommodationrequirements of the Americans with Disabilities Act (ADA), which provide direct medical orremedial benefit to the individual. Environmental modifications are typically permanently

installed fixtures or modifications that change a site’s structure.

Personal Assistance : Agency or Consumer-Directed hands-on support with personalassistance, activities of daily living (ADLs), instrumental activities of daily living,community access, assistance with medication and other medical needs, and, with theexception of companion services, monitoring health status and physical condition. Theseservices may be provided in home and community settings to enable an individual tomaintain the health status and functional skills necessary to live in the community orparticipate in community activities. Consumer-directed services offer the individual orfamily the option of hiring workers directly, rather than using traditional agency staff.

Personal Emergency Response Systems (PERS):An electronic device that enables individuals to secure help in an emergency. PERSelectronically monitors individual safety in the home and provides access to emergencycrisis intervention for medical or environmental emergencies through the provision of atwo-way voice communication system that dials a 24-hour response or monitoring centerupon activation and via the individual’s home telephone line. When appropriate, PERS mayalso include medication-monitoring devices.

Prevocational services :Services aimed at preparing an individual for paid employment or volunteer work, but which are not job task-oriented. They are aimed at a more generalized result. Prevocationalservices are provided to individuals who are not expected to join the regular work forcewithout supports or participate in a transitional sheltered workshop program within a year(excluding supported employment programs).

Residential Support Services :Supports provided in an individual’s ho me, community,or in a licensed or approved residence. These supportsshould enable the individual to improve or maintain hisor her health and medical status, live at home and use thecommunity, improve abilities and acquire new homeliving or community skills, and demonstrate safe andappropriate behavior in his or her community.

In-home supports are typically provided in aprivate residence and are supplemental to theprimary care provided by the individual,caregiver(s) or the parent(s). In-home supportsmay not supplant this primary care. In-homesupports are delivered on an individualized basis,typically for less than a continuous 24 hours,

TIP: Does your loved one

have a connection witha particular staff

member at NVTC?Consider talking to that

staff person about becoming a SponsoredResidential Provider sothey are paid to supportyour loved one in their

home.



36

according to the Plan for Supports and are deliveredprimarily with a 1:1 staff-to-individual ratio.

Congregate residential supports are typicallyprovided to an individual living: 1) in a group home , 2) inthe home of the ID Waiver services provider (such as

sponsored residential where up to two individuals live inthe home of a professional service provider and become anintegrated part of the family), or 3) in an apartment orother home setting, with others receiving ID Waiverresidential support simultaneously.

Respite :Agency or Consumer-Directed services designed to providetemporary, substitute care for that which is normallyprovided by the family or other unpaid, primary caregiverof an individual. These short-term services may be

provided because of the primary caregiver’s absence in anemergency or on-going need for relief. Consumer-directedservices offer the individual or family the option of hiringworkers directly, rather than using traditional agency staff.

Services Facilitation (SF):A service that assists the individual and family members inarranging for, directing, and managing services provided

through the consumer-directed (CD) model. Individuals choosing the CD model of servicedelivery may receive supports from a services facilitator who meets the requiredknowledge, skills and abilities necessary for this service, is self-employed or hired by anagency. Services Facilitators provide required training and support to individuals andfamily members to hire, train and dismiss employees who provide supports to theindividual in his/her own home or community.

Skilled Nursing Services :Nursing services ordered by a physician for individuals with serious medical conditionsand complex health care needs. This service is available only for individuals for whomthese services cannot be accessed through another means. These services may be providedin an individual’s home, community setting or both.

Supported Employment :Job skills training in settings in which persons without disabilities are typically employed.This service is for individuals with developmental disabilities for whom competitiveemployment at or above the minimum wage is unlikely without on-going supports andwho, because of their disability, need ongoing employment support to perform in a work setting. Supported employment is defined as intermittent support, usually provided one-on-one by a job coach to an individual in a supported employment position who, duringmost of the time on the job site, performs independently. Group supported employment

Tips for a SuccessfulMove:

Plan a walkthroughshortly before the

move to identify anylast minute issues Develop a plan for

how each teammember will help

Develop a plan withthe provider for

ongoingcommunication

Have a plan for addressing major

concerns and knowhow the provider responds to these

concerns



37

is defined as continuous support provided by staff to eight or fewer individuals withdisabilities in an enclave, work crew, entrepreneurial model or benchwork model.

Therapeutic Consultation :Expertise, training, and technical assistance in the individual’s home or communi ty in any

of the following specialty areas to assist family members, caregivers, and other serviceproviders in supporting the individual to facilitate implementation of the individual’sdesired outcomes as identified in the Individual Support Plan. The specialty areas are:Psychology, Behavior, Speech and Language Pathology, Occupational Therapy, PhysicalTherapy, Therapeutic Recreation and Rehabilitation Engineering. This is only aconsultation and not ongoing therapy.

Transition Services:Purchase of services and essential goods for anyone who is being discharged from anICF/nursing home/long-stay hospital, receiving a Money Follows the Person slot orcurrently receiving ID Waiver services and moving into a private residence (includes a

family member’s home, one’s own ap artment or home, adult foster care, or sponsoredresidential). Examples of allowable services/goods: security deposits, householdfurnishings, utility deposits, pest extermination, move-in cleaning service, movingexpenses, proof of identity documents, and delivery of appliances.

What if your loved one needs a service you don’t see listed on this menu?That does not mean that the service would be unavailable to them. Theremay be another funding stream (e.g. CSB funds or local programs, freecommunity services, etc.) that provide s for that service. Make sure you’reworking with your team to ensure that service will be a part of your lovedone’s support plan, no matter the source. If you’re having trouble locatinga provider of a specific service, talk to other families who are served by the

same providers, your Support Coordinator, and the staff who support your loved one to seeif they have ideas. Check out www.disabilitynavigator.org , the Arc Resource Connection at www.thearcofnova.org to search for providers. Don’t forget that some individuals leavingNVTC will have primary insurance that is able to cover the cost of some services andproviders not covered by Medicaid. Some doctors look out for unusual cases and like toserve people who have unique needs. Also note that the DOJ Settlement mandates that theRegional Community Support Center, now housed at NVTC to provide dental and otherservices, be moved off campus and made available to anyone receiving community services.

TIP:If this process seems scary or overwhelming, consider

talking to someone who has been there. Volunteers in theFamily Mentoring Program have been through the process

and are willing and able to help you during this time of change. See “Family Mentoring Program” in contacts to get

started.

http://www.disabilitynavigator.org/



http://www.thearcofnova.org/






38

Money Follows the Person (MFP) 14

Money Follows the Person (MFP) is a program initiated several years ago to assist individuals interested in leaving facilities, including training centers and nursing homes,and transitioning to the community. MFP allows someone leaving a training center to

move to the community through a special channel for getting a waiver.

Stipulations of MFPIn order to qualify for MFP, someone must have lived in a qualifying facility (e.g. NVTC) formore than 90 days and be Medicaid eligible for at least one month prior to discharge.Almost anyone leaving the training center will likely qualify for the first two provisions.Lastly, the person must move to one of the following:

A home that an individual or his or her family member owns or leases An apartment with an individual lease,

with lockable entrance and exit, that includes living, sleeping, bathing andcooking areas

A residence, in a community-basedresidential setting, in which no more thanfour (4) unrelated individuals reside

Someone who leaves the training center with anMFP ID waiver must stay in a qualifying residence(though they may move from one qualifyingresidence to another) for at least one year in orderfor their ID waiver to become permanent.

Advantages of MFPThere are a few advantages to using the MFPProgram when transitioning. First, MFP canprovide supplemental, non-Medicaid funds, of upto $5,000 for home modifications that would allow someone to safely transition. This maybe important if someone needs a modification that will cost more than the $5,000 limit onthe ID Waiver. For example, if someone needed all the doors in a home widened and rampsput in for a wheelchair and the total cost was $10,000, the ID Waiver could cover $5,000and MFP could cover the additional $5,000.

Someone using MFP to transition may qualify for temporary rental payments while homemodifications are being completed.

14 Money Follows the Person DBHDS brochure, available at http://www.dbhds.virginia.gov/documents/ODS/omr-wvr-MFP-Brochure.pdf

TIP:Keep MFP in mind on

tours and in your planning process. Since only

certain types of homesmeet MFP qualifications,you’ll need to make sure

you’re looking atqualifying choices if you’d

like to take advantage of the benefits of this program.

http://www.dbhds.virginia.gov/documents/ODS/omr-wvr-MFP-Brochure.pdf





39

Types of Residential Supports

Can Someone with Complex Needs Use a Waiver?

Absolutely! Remember, many states have no public ICFs and all individuals in those states

are supported in their community. In fact, NewHampshire, Rhode Island, and Michigan are three goodexamples of states with no institutions that UnitedCerebral Palsy ranks as top places in the country foroverall quality of life and supports for people withdisabilities 15 . In Virginia, the ID Waiver funds severalresidential options including group homes, sponsoredplacements, and 24- hour supports in someone’s ownhome (See the section on ID Waiver Services for morecomplete definitions of these options). People with verysignificant levels of needs can be supported in all of

these settings through the waiver.

It is important to note that not all homes provide thesame exact services. For example, one provider of residential services may specialize in complex medicalneeds but may be less experienced with challengingbehaviors. You will work with your team to identify aprovider who has the knowledge, skills, and abilities tosupport your loved one. Remember, no one will moveuntil appropriate supports are in place and the wholeteam will provide ongoing follow-up to ensure thetransition is successful.

Keep in mind that over the coming years, waiver reform is anticipated that would expandthe scope of services the ID waiver funds. This could mean that a particular service that cannot be supported under the waiver today may be possible before the time your lovedone moves into a community placement. Actively work with your transition team to stayabreast of these developments.

What about Community ICFs?

The training centers are classified as “Intermediate Care Facilities” or ICFs. Houses withthis same licensing classification also exist in the community for individuals who need alevel of medical care or specialized supports not currently available in a group home.These homes are funded through the same funding streams as the training center and not through Waiver funding. Community ICFs look very much like group homes from theoutside in that they are in integrated communities in houses that typically have 5-8

15 United Cerebral Palsy’s “The Case for Inclusion Rankings Map 2012,” available at: http://www.ucp.org/the-case-for-inclusion/2011/ranking_map.html

Complex NeedsThe following are

examples of some of theneeds community

residents have who utilizewaiver supports:

Tracheotomy G or J tubes

Kidney failure/dialysis Behaviors that may be

dangerous to self or others

Frequent seizures PICA

Limited or no mobility

http://www.ucp.org/the-case-for-inclusion/2011/ranking_map.html








40

residents, though they may have more. However, they have increased requirements fornursing care and they have contracts with specific physicians in the community. You wouldnot use a waiver in a community ICF, just as you do not use a waiver in the training center.Community ICFs are not operated by the state, but are instead run by private providers andsometimes by local counties. Since they are privately operated, they have discretion in

accepting the individuals they serve.

Community ICF placements are still funded through Medicaid, but in specific contracts foreach person needing services. If your team is unable to locate another type of provider that can serve your loved one, you may consider a community ICF. Sometimes the sameproviders who offer group homes offer ICFs too. This may offer an opportunity for yourloved one to move to a group home in the future when a group home or other residentialoption can meet their needs. Remember that the DOJ settlement emphasizes communityplacements that are small (4 or fewer clients), so you will likely be asked to exploreplacements in that category first to see if they meet the needs of your family member with adisability.

Life EstatesA life estate exists when a property is owned by someone only for their lifetime. Forexample, a family could choose to leave their home to their child with a disability. That child could become a “life tenant” who is entitled to live in that home for th e remainder of their life. Upon the death of the person with a disability, ownership of the home wouldeither revert to another family member, a non-profit, or a combination of both. Theadvantage of a life estate is that you can ensure your child will be able to live in the exact same home for their entire life. If you choose to work with a non-profit service provider,you may want to arrange the situation so that they were responsible for providing careattendants and other services in the home 24 hours a day as well as for finding roommateswho would also receive supports in the home. Upon the death of your child, the non-profit would become the home’s owner and would use that home to provide housing for otherpeople with disabilities. If you’re inte rested in ensuring your home becomes your lovedone’s home, you may want to consider this option.

You may feel that a particular residential support option is the right choice, but wonder what will happen if something goes wrong. In thiscase, an ounce of prevention is worth a pound of cure. The best thingyou can do to prevent a troublesome situation in the future is dothorough planning ahead, select providers who are well equipped tosupport your loved one, and have trial visits before a move is complete.

If, despite all your planning, there are still challenges, there are a number of options to helpyou resolve the issue.

For example, if you feel that most things are going well, but one particular need or want isnot being addressed, call your l oved one’s support team in for a meeting. Give specificexamples of what is not working and brainstorm on solutions. Perhaps the provider canincrease staff training, offer new alternatives, or make other minor changes to alleviate



41

your concerns. You’ll never stop working as a team to put all of the right supports intoplace.

If you feel there is a serious threat to health and safety, see APPENDIX A and contact thepeople highlighted in yellow. They are groups designed to respond immediately. They may

come on site to help assess the situation and work with providers on a corrective actionplan. They could also assist with training.

If you feel that a behavioral or mental health crisis is happening, you should call the START24-hour crisis team (APPENDIX B) to come and intervene. They can stay in the individual’shome for up to 72 hours and have a regional respite home where individuals can stay forup to 30 days. Providers could use that time to get increased training and resources inplace. If, after all of these options have been exhausted, you still feel the situation is not working, talk to your team about selecting a different service provider. Learn from what caused troubles the first time and make sure the next provider is able to address thoseconcerns appropriately.





43

may open a First Party or Self-Funded Trust. A person can have just one type of trust, ortwo or more trusts depending upon the source of the money going into the trust.

With any trust, there are specific rules that must be followed to ensure that benefits arenever jeopardized. You should work with an experienced Special Needs Trust or a lawyer

with experience in this area to explore the options available and determine how to best maintain a trust for your loved one. For a list of Special Needs Trust contacts in NorthernVirginia, see APPENDIX A.

If you already have a trust for your loved one with a disability, be sure it is a Special NeedsTrust. A standard trust does not protect benefits and other services. Special Needs Trustsare governed by federal rules, so you do not necessarily have to establish the trust in thestate where your loved one will live. Talk to the trust administrators about their familiaritywith other states and how they can continue to serve you if you move out of the area.



44

PROVIDERS AND THEIR SERVICES

You will work with your transition team to identify providers that will suit the needs andwants of your loved one. Below is a list of residential and vocational service providers inNorthern Virginia if you would like to explore options or ask them questions directly. Be

sure to notify your transition team of any contacts you make so they may assist you inplanning. Your team will assist you with the entire process, so you do not need to contact these providers on your own unless you would like to do so. Please note that the addressgiven is the main office address. Program sites may be located in other areas. Also keep inmind that new programs open on a regular basis, so you should keep in touch with yourSupport Coordinator about any emergingoptions.

This list only includes providers contracted bythe Community Services Boards in Alexandria,Arlington, and Fairfax-Falls Church. If the

person leaving the training center is moving toanother jurisdiction, contact the CSB where theywill live to get a list of local providers. If theperson is moving out of state, talk with thecommunity-based services administrators at the destination to locate appropriate providers.

Each provider has different abilities, skills,knowledge, and staff. All providers are licensedby the state and must meet the same minimumstandards for support and care. Oversight of allproviders has greatly increased under the DOJsettlement and will remain at a heightened levelthroughout the settlement and beyond. Someproviders have specialty services or staff available. During your tours, be comfortableasking about the specific services your lovedone needs or desires. It is very important totake tours and get comfortable with the idea of your loved one being supported in a newsetting. Seeing the homes and job supports in person can be very helpful in allowing you tovisualize the transition. Don’t hesitate to ask for references from other individuals servedby these providers to get a feel for their abilities, history, and problem solving processes.

Really work with those who support your loved one on a daily basis to get the best information on what your loved one really needs, not just what they have now. Forexample, some people in the training center are lifted with a mechanical lift in and out of the shower even when they could bear weight. However, if your loved one can bear anyweight during moving, it may provide tremendous physical benefit to them to work with aprovider who is willing to help them do that. Don’t assume that someone needs supports

Al l Eyes on You Keep in mind that once your loved

one moves into a community placement, lots of people will see

him or her to provide oversight.Some examples are:

Home staff Home managers and

directors Neighbors

Community members atrestaurants, social events,

outings Support Coordinator

Vocational staff Vocational managers and

directors Transportation staff

Friends at home,transportation, or job site



45

identical to what they have now. Community-based living is designed to be personcentered, meaning it should be highly customized to meet the needs of each person, not simply follow standard protocols.

Remember that new providers are coming to the area often. Many of them have experience

in other parts of Virginia or out of state. Stay in contact with your transition coordinationteam members to meet with these new providers as they come available. You may be ableto work with a new or existing provider as they build or modify a home which presents aunique opportunity to give input into how the home could be customized to support yourloved one.

You may find that, despite great planning, the providers you initially identifyare not the right fit. If you decide to look at other options, start touring newproviders immediately and work with your team, including the newproviders, to plan for a move to a new home or job. Support Coordinatorscan help you identify other providers that will meet the needs of your loved

ones, but they cannot give personal endorsements as each person’s situationis unique and what worked for someone else may not work for your loved one. You canexpect Support Coordinators and providers to share general information about successesof other individuals with similar needs and help you decide where to start looking first.

Northern Virginia Service Providers

Provider Address Website Phone ServicesProvided

ContractedCSBs

AlexandriaCity CSB

720 North Saint AsaphSt. Alexandria, VA

22314

www.alexandriava.gov/ CSB (703) 838-6400 • Residential Alexandria

AlexandriaVocationalServices

3105 Colvin St. Alexandria, VA 22314

www.alexandriava.gov/uploadedFiles/dchs/info/Service.pdf

(703) 746-3333 • DaySupport

Alexandria

Chimes 3957 Pender Dr., Suite120Fairfax, VA 22030

www.chimesva.org (703) 267-6558 • DaySupport• Residential

Fairfax Alexandria

CommunityConcepts,Inc.

17932 South FraleyBlvd, Suite 300Dumfries, VA, 22026

www.Comconinc.net (703) 680-5127 • Day Support• Residential

Fairfax Alexandria

CommunityLiving

Alternatives

9401 Lee Hwy, Suite406Fairfax, VA 22031

www.cla-va.org (703) 352-0388 • Residential Fairfax Alexandria Arlington

CommunityResidences

14160 NewbrookDr. Chantilly, VA 20151

www.communityresidences.org (703) 842-2300 • Residential• Day Support• In-home supports

Fairfax Alexandria Arlington

CommunitySystems

8136 Old Keene MillRd, Suite B300Springfield, VA 22152

www.communitysystems.org (703) 913-3150 • Residential• Independent Living• Day Support• SupportedEmployment

Fairfax Arlington

Didlake 8621 Breeden Ave.Manassas, VA 20110

www.didlake.org (703) 361-4195 • SupportedEmployment• Day Support

Fairfax Alexandria

http://www.alexandriava.gov/

http://www.alexandriava.gov/uploadedFiles/dchs/info/Service.pdf




http://www.chimesva.org/

http://www.comconinc.net/

http://www.cla-va.org/

http://www.didlake.org/

http://www.didlake.org/

http://www.cla-va.org/

http://www.comconinc.net/

http://www.chimesva.org/




http://www.alexandriava.gov/



46

Provider Address Website Phone Services Provided ContractedCSBs

ECHO Works 71 Lawson Rd SELeesburg, VA 20175

www.echoworks.org (703) 779-2100 • SupportedEmployment• Day Support

Fairfax

EliteHealthcareServices LLC

None (240) 460-8083 • Residential Alexandria

EstellePlace/JirehPlace LLC

17290 River RidgeBlvd. Woodbridge, VA

www.estelleplacellc.com (703) 221-9600 • Residential• Day Support

Alexandria

GabrielHomes

PO Box 710207Herndon, VA 20171

www.gabrielhomes.org (703) 476-1592 • Residential Fairfax

HartwoodFoundation

3702 Pender Dr., Suite410, Fairfax, VA 22030

www.hartwoodfoundation.com (703) 273-0939 • Residential• In-home supports

Fairfax Alexandria

HeritageHouse of Virginia

1075 Garrisonville Rd.,Suite 109 Stafford, VA22556

www.hhofva.com (540) 657-9399 • Residential Fairfax

JewishFoundationfor GroupHomes

1500 East Jefferson St.Rockville, MD 20852

www.jfgh.org (240) 283-6000 • Residential• Transitional day

support

Fairfax

Job DiscoveryInc.

10345 DemocracyLaneFairfax, VA 22030

www.jobdiscovery.org (703) 385-0041 • SupportedEmployment

• Day Support• Residential


LangleyResidentialSupportServices

2070 Chain Bridge Rd.,Suite G55Vienna, VA 22182

www.langleyresidential.org (703) 893-0068 • Residential• In-home supports

Fairfax

L’Arche 2474 Ontario Road NW

Washington, D.C.20009-0971

www.larchewashingtondc.org (202) 436-1133 • Residential Arlington

LindenResources

750 South 23rd St. Arlington, VA 22202

www.linden.org (703) 521-4441 • SupportedEmployment

• Day Support

Fairfax Alexandria

MVLE 7420 Fullerton Rd.,Suite 110Springfield, VA 22153

www.mvle.org (703) 569-3900 • SupportedEmployment

• Day Support

Fairfax Alexandria

PathwayHomes

10201 Fairfax Blvd,Suite 200Fairfax, VA 22030

www.pathwayhomes.org (703) 876-0390 • In-home supports• Supported Living

Fairfax

Resources for Independence

of Virginia

10340 DemocracyLane, Suite 103

Fairfax, VA 22030

www.sunrisegroup.org (703) 218-1800 • Residential• Sponsored

residential• In-home supports

Fairfax Alexandria

Arlington

ServiceSource

6295 Edsall Rd. Suite175, Alexandria, VA22312

www.servicesource.org 703-461-6000 • SupportedEmployment

• Day Support

Fairfax Alexandria

SaintColetta’s

207 South Peyton St. Alexandria, VA 22314

www.stcoletta.org ( 571) 438-6940 • SupportedEmployment

• Day Support

Fairfax Alexandria

http://www.echoworks.org/

https://www.google.com/url?sa=D&oi=plus&q=https://maps.google.com/maps?ie%3DUTF8%26cid%3D15391582098676791951%26q%3DEstelle%2BPlace%2BLLC%26iwloc%3DA%26gl%3DUS%26hl%3Den


http://www.estelleplacellc.com/

http://www.linden.org/

http://www.mvle.org/

http://www.mvle.org/

http://www.linden.org/

http://www.estelleplacellc.com/



http://www.echoworks.org/



47

Pre-Tour and Post-Move Processes

The process of starting to look at providers, touring, planning, and moving will likely takearound 12 weeks if the process moves quickly and an appropriate provider is identified.

The process can go more quickly if needed, but it can also be extended if you havedifficulties locating the ideal provider or if modifications need to be made by the selectedprovider. The steps below will happen during the transition period to ensure a move isappropriate and well planned.

Before Touring:

Once a residential or vocational provider is identified as a possible choice for someoneleaving the training center, the Community Integration Manager on your support team willnotify the Office of Licensing and the Office of Human Rights. (Note: If a provider has beenreviewed within the last 30 days, the review will not reoccur at this time.) A licensingspecialist will prepare a report on whether or not the proposed provider is able to offer thenecessary and requested services. This review will be based upon a site visit or thelicensing spec ialist’s knowledge if they are already familiar with the proposed provider.The licensing specialist will submit their review of whether or not the proposed provider isable to offer the services requested to the Human Rights office, the Community IntegrationManager, and the Community Resource Consultant.

After Touring:

If an individual successfully completes a tour with a provider and selects them, theCommunity Integration Manager will again notify the Office of Licensing and the Office of Human Rights. The licensing officer (and Human Rights if needed) will again visit theprovider and ensure that they are able to meet the specific needs (medical, physical,behavioral, etc.) for the individual seeking placement based upon the needs outlined in theindividual’s Person Centered Plan. The licensing specialist will notify the team if anyadjustments need to be made before someone moves, if the placement is suitable as it is, orif the placement cannot be made suitable. This information will be shared with theprovider and the support team. If there is a good match, a discharge date from NVTC will

Provider Address Website Phone Services Provided ContractedCSBs

St. John’sCommunityServices

7611 Little River Tpke,Ste 203 West

Annandale, VA 22003

www.sjcs.org (703) 914-2755 • Residential• Day Support• Supported

Employment• In-home supports


Volunteers of America-Chesapeake

14381 Hereford Dr.Woodbridge,VA 22193

www.voaches.org (703) 590-1969 • Residential Fairfax Alexandria Arlington

http://www.sjcs.org/

http://www.voaches.org/

http://www.voaches.org/

http://www.sjcs.org/



48

be selected and planning for a transition to the community will likely begin with day,evening, and or/overnight and training visits with the new provider.

After the Transition:

The licensing specialist will visit about once per week for the first month. They willcontinue to visit monthly for the first year after starting a new service. A representativefrom the Office of Human Rights will visit around the end of the first month and as neededthereafter. The Community Resource Consultant will visit towards the end of the secondmonth to review the transition plan, interview staff, and meet with the individual. For a fulllist of all the visits that will occur after an individual moves, please see Appendix C.

TIP: Consider additional services like recreation activities. For example, SPARC offers a

SPARC On Wheels program where recreation staff come to homes in the evenings to dofun activities like cooking, games, music, and art. This would not interfere with your

loved one’s existing residential supports, but would offer a fun option for the evening s.For more information, see www.sparcsolutions.org or call (703) 338-6185

http://www.sparcsolutions.org/






49

Provider Checklist

When considering providers, ask lots of questions! Consider these questions, but alsomake a list of your own to take with you on every tour. Also think about having someonego with you to give second opinions and take notes as you ask questions.

What makes you a unique provider? What is your philosophy on care? What are your specialties? What training do you have? Your staff? How often do you update these? What is the staff turnover rate for this home and others that you operate? Can all staff give medications? Can you accommodate special diets? Can you work with a nutritionist if needed? How are meals planned? What happens with someone is sick or injured? (Many providers go with individuals

to the hospital and stay with them the entire time they’re admitted)

How do you monitor the quality of your services and staff? What is the average day like for a resident? How many individuals do you serve? What is your staff to client ratio? When are managers and supervisors on site? Do you have nurses on call and/or nursing oversight? How often do they see

residents? How do you serve individuals who need ongoing therapies not covered through the

ID Waiver? Do you offer references? Who would I contact if I had a concern? Do you have a corporate and a local office? Are you a non-profit or for profit business? What is the staffing pattern/shift schedule? How long have you been in operation? What is the status of your licensure? Has it ever been suspended or revoked? When

does your current license get renewed? (Visit http://lpss.dbhds.virginia.gov/ to see past licensing reports)

How is your program customized to meet the needs of each individual? Can you give examples of special supports you have put in place to meet the needs

of individuals with medical or behavioral needs? What is your philosophy on dealing with behavioral episodes that are

more difficult than usual? Who provides transportation to and from work, medical appointments, and

recreational activities? (Many providers are able to provide transportation throughtheir own accessible vehicles for some activities)

Who cleans the homes and how often? How many clients live in each home? What are their approximate ages, needs,

schedules? Is the home fully accessible? Is it designed for individuals to age in place?







50

What are your policies on vacations and visits? Are individuals able to attend religious services of their preference? How are costs for rent, food, and activities covered? How/when do these costs

vary? Do you own or rent the homes?

How large is your organization? What are your funding streams? Who manage s the individuals’ Social Security benefits and other income? Can my loved one share their home with a friend from NVTC? Can I visit the home when the residents are there? Do you allow unannounced visits by family and loved ones? Use your eyes, ears, and instinct. Look for accessibility features (e.g. ramps,

bathroom bars), safety features (e.g. smoke alarms, screens, locks, fences), generalrepair, smell, and overall appearance to assess a home. Observe staff and client relationships and dynamics. Is this a place you would want to live?

Keep the answers to these questions in a convenient place. If you aren’t sure you

understood something, follow up with the provider to make sure you have the correct information. Record the name of the person with whom you spoke and their contact information. Keep this together with contacts for day to day concerns, questions about anindividual’s plan, concerns about care provision, and after hours emergencies. If you don’t feel you got the complete picture, ask to tour again.



51

MICROBOARDS

What is a Microboard?A Microboard is a group of family and friends who care about a person with a disability andvolunteer their time to help support that person. Microboards can also have members likelawyers, landlords, and accountants who are willing to volunteer their time to assist insupport planning and management for a personwith a disability. In Virginia, a Microboard can paya small fee to be considered a non-profit corporation.

Microboards do not take the place of your support team. They are another way for families to ensurethat knowledgeable, caring friends and family areinvolved with the ongoing support of their lovedones. Microboards work with the support team to

advocate for the person with a disability.

Why Use a Microboard?Microboards are still relatively new in Virginia, but they have taken off in other states like Tennessee.They offer a number of wonderful advantages andoptions for people with disabilities and theirfamilies.

A Microboard means that someone with adisability has more people than just parents or asibling working on their supports. While someonewith a disability will always have a formal support team that includes a support coordinator,provider(s), and other people who work to support the individual, members of that team will changeover time if someone leaves their job. TheMicroboard members are friends and family whohave known the individual for a long time and willcontinue to serve on the Microboard for the life of the individual, unless they decide to leave forpersonal reasons.

A Microboard also means that there are more than just one or two family members whoknow someone’s histo ry and is involved in their life. Families can use the Microboard tohelp collect and maintain information about someone’s needs and wishes so that information remains available if parents or other relatives pass away or becomeincapacitated. Microboard members can lend extra eyes and ears to the oversight of care.

TIP: Even if you don’t use amicroboard, make sure

your loved one’s historyand needs are recorded.

Consider making sure thefollowing is available in

print to all providers: All diagnoses Tips to get the

person to takemedication

How someonecalms down

What makessomeone happy,

sad, frustrated Where someone’s

equipment was purchased andrepaired

Names/contact infofor family

Names/contact infofor all providers in

the past



52

You may even want to consider naming a Microboard the individual’s guardian if aguardian is needed.

Microboards help provide solutions and manage supports. When an individual is facing acrisis or a problem, Microboards act as a team to help problem solve and assist in managing

concerns. Microboards can also help manage staff hired to support someone with adisability or manage other waiver servic es so that burden doesn’t fall on a single familymember. If a family has a home they would like the person with a disability to live in toreceive supports, the Microboard can manage that property. Microboards can qualify forspecial low interest loans through the Virginia Housing Development Authority to help aperson with a disability live in a home owned and managed by the Microboard.

Microboards are meant to be sustainable. The Microboard will develop bylaws, a meetingschedule, a succession plan, and a scope of authority. All of that can be changed over time,of course, to adapt to changing needs. You can set up a Microboard at any time and theMicroboard can grow in size or scope as needed.

How Do I Learn More about Microboards?Though small in numbers right now, there are already dozens of Microboards establishedin Virginia. No two are identical as they are all tailored to meet the needs of the individualthey support. To learn more, we suggest you contact the newly founded VirginiaMicroboard Association at [email protected] or call (757) 460-1569. Theassociation was established to help people learn more about Microboards and to help themget started. They are available to share resources, ideas, and experiences.







53

Glossary

Conservator- Decision maker appointed by the court to make financial decisions for aperson who has been deemed incapacitated. The conservator handles the person’s estateand/or financial affairs as specified in the court order.

http://www.vda.virginia.gov/pdfdocs/Guardbook.pdf

CSB (Community Services Board)- The local government agency responsible forcoordinating services and supports for people with intellectual disabilities as well as thosewith mental health and substance abuse needs. CSBs in Northern Virginia are divided upby county or city. The CSB will help you manage your waiver and will provide your support coordinator. http://www.vacsb.org/

DMAS (Department of Medical Assistance Services)- The Virginia state agency that administers Medicaid. DMAS also manages the Developmental Disability (DD), Elderly or

Disabled with Consumer Direction (EDCD), and some other waivers, but not the ID waiver.http://dmasva.dmas.virginia.gov/

DBHDS (Department of Behavioral Health and Developmental Services) - Thegovernmental department in Virginia that coordinates Intellectual Disability Services. Thisdepartment also manages the ID Waiver. DBHDS is the state agency that is tasked withfulfilling the terms of the Department of Justice Settlement Agreement.http://www.dbhds.virginia.gov/

Guardian- Decision maker appointed by the court to make decisions regarding personalaffairs (e.g. support, care, health, safety, habilitation, education, treatment) for anindividual who has been deemed incapacitated.http://www.vda.virginia.gov/pdfdocs/Guardbook.pdf

Medicaid- The federal health plan for people in poverty and for people with disabilities.State plan Medicaid is health insurance for people with qualifying incomes. Long TermCare (LTC) Medicaid is the type of Medicaid that funds ID Waivers and all other statewaivers. Someone may have both Medicaid and Medicare at the same time. Medicaid isalways a secondary insurance unless there is no other insurance.http://dmasva.dmas.virginia.gov/

Medicare- The federal health plan for people aged 65 or older. People with disabilitiesmay receive Medicare younger than age 65 if they meet certain criteria, like when a parent is also Medicare eligible and a child has been receiving Social Security disability benefits for24 months. Someone may have both Medicare and Medicaid at the same time.http://www.medicare.gov/


http://www.vacsb.org/


http://dmasva.dmas.virginia.gov/


http://www.dbhds.virginia.gov/






http://www.medicare.gov/











54

MFP (Money Follows the Person)- A special option for someone leaving a training centeror other institutional setting and moving to community-based services where for or fewerunrelated people live together. MFP provides extra funding for transition services forsomeone who qualifies. http://www.dbhds.virginia.gov/ODS-MoneyFollowsPerson.htm

Microboard- A mini-corporation designed to help coordinate services and supports forone person with a disability. The microboard is made up of family, friends, supporters, andspecia lists who all want to ensure a person’s success. http://www.communityopportunities.org/ArcNRV/Microboards_2.html

Person Centered Plan (PCP)- The annual plan that details the talents, strengths, andneeds of an individual that is created by their entire support team. This plan also lists theservices to be provided, goals to be met, and deadlines for all activities. The plan is alwaysrevised annually but can be updated or changed at any time.http://www.dbhds.virginia.gov/ODS-PersonCenteredPractices.htm#forms

Personal Support Team (PST)- The team of professional who will work with you andyour loved one with a disability to plan for transition and ongoing support services. Theteam will include your Support Coordinator, NVTC staff, specialists and staff who knowyour loved one, and the providers you select for vocational and residential services.

Regional Support Team (RST)- The regional team comprised of disability support expertswho overviews transition barriers and makes recommendations on placement options.Your case will go before the Regional Support Team based upon a referral from either theCommunity Integration Manager at the Training Center or the Community ResourceConsultant from DBHDS. You may ask for a referral.

Settlement Agreement- The legal settlement between Virginia and the Department of Justice that includes provisions for people currently living in training centers, nursinghomes, and people already living in the community who may or may not be utilizing aWaiver to fund supports. It is a ten year agreement that focuses on ensuring Virginia is nolonger in violation of disability rights law.

SIS (Supports Intensity Scale)- An assessment of the types of supports a person with adisability needs to be successful in completing a variety of daily and life activities. Thesupport team will complete the SIS every three years and update as needed in the interim.

http://www.dbhds.virginia.gov/ODS-SIS.htm

Special Needs Trust- A unique type of trust fund designed to allow a person with adisability to maintain eligibility for state and federal benefits while also maintainingresources. The Special Needs Trust can be funded by the person with a disability (throughalready existing assets) or by friends and/or family members.http://thearcofnovatrust.org/

http://www.dbhds.virginia.gov/ODS-MoneyFollowsPerson.htm



http://www.communityopportunities.org/ArcNRV/Microboards_2.html


http://www.dbhds.virginia.gov/ODS-PersonCenteredPractices.htm#forms




http://thearcofnovatrust.org/









55

Support Coordinator (Case Manager)- The person through the Community ServicesBoard who works with someone with a disability to help them identify, access, andmaintain supports through the person ’s ID Waiver. Support coordinators also helpsomeone identify and utilize programs outside the waiver (e.g. housing resources, grants)that may benefit the person. http://www.vacsb.org/ Note that support coordinators

under the DD Waiver are still called “case managers,” as are privately hired people who dothis work.

Waiver- A waiver is a bundle of long term care support services funded through Medicaid.Individuals leaving the training center will utilize the Intellectual Disability (ID) Waiverthat is managed by the Department of Behavioral Health and Developmental Services.Waivers fund community-based supports including sponsored residential services, grouphomes, in-home services, crisis stabilization, job placement supports, day programs, andmore. http://dmasva.dmas.virginia.gov/Content_pgs/ltc-wvr.aspx










56

APPENDIX A- CONTACTS

Names highlighted in yellow are people you would contact in the event of an emergency or concern that needs immediate attention, such as an imminent risk of harm.

Contact Name Contact Information When Do I Call?

Adult ProtectiveServices (APS)

Alexandria- (703) 746-5778http://alexandriava.gov/dchs/adultservices/default.aspx?id=50398

Arlington- (703) 228-1700http://www.arlingtonva.us/department s/HumanServices/AgingDisability/page69844.aspx

Fairfax- (703) 324-7450http://www.fairfaxcounty.gov/dfs/

State Hotline (after business hours)(888) 832-3858

If you suspect or see abuse, neglect, orexploitation of someone with adisability. If there is an immediate risk of harm, call 911.

AlexandriaCommunity ServicesBoard

(703) 746-3400http://alexandriava.gov/CSB

Alexandria residents should call theirSupport Coordinator about planning fortransition, lining up community services,concerns about transition, provider

tours, ID Waiver services

Alexandria Division of Human Services

(703) 746-5700http://alexandriava.gov/DCHS

Alexandria residents should work withtheir Long Term Care Eligibility Workerregarding their loved one’s Medicaideligibility

Arlington CommunityServices Board

(703) 228-1700http://www.arlingtonva.us/Department s/commissions/humanServices/CSB/CSBMain.aspx

Arlington residents should call theirSupport Coordinator about planning fortransition, lining up community services,concerns about transition, providertours, ID Waiver services

Arlington Department of Human Services

(703) 228-1550http://www.arlingtonva.us/Department s/HumanServices/HumanServicesMain.aspx

Arlington residents should work withtheir Long Term Care Eligibility Workerregarding their l oved one’s Medicaideligibility

http://alexandriava.gov/dchs/adultservices/default.aspx?id=50398



http://www.arlingtonva.us/departments/HumanServices/AgingDisability/page69844.aspx




http://www.fairfaxcounty.gov/dfs/


http://alexandriava.gov/CSB


http://alexandriava.gov/DCHS


http://www.arlingtonva.us/Departments/commissions/humanServices/CSB/CSBMain.aspx




http://www.arlingtonva.us/Departments/HumanServices/HumanServicesMain.aspx




















57


The Arc of NorthernVirginia

[email protected](703) 532-3214http://thearcofnova.org/

For information on advocacy, SpecialNeeds Trusts, upcoming workshops andevents, and assistance with informationand referrals

Attorneys/Lawyersfor guardianship

(Email addressesprovided for attorneyswho have made that information availableon their websites)

All Serve Northern Virginia-

Jean Galloway Ball and Associates(703) 359-9213http://www.uselderlaw.com/

Kenneth Labowitz(703) 519-0999http://www.dingmanlabowitz.com

Legal Services of Northern Virginia(If you meet the income requirements)(703) 778-6800 http://www.lsnv.org/

Needham, Mitnick, & Pollack (703) 536-7778http://www.nmpattorneys.com/

Gerard Rugel(703) 709-9718

Alexander [email protected] (703) 224-8044http://www.sorokolaw.com/

Kelly [email protected] (703) 237-0027http://www.kellythompsonlaw.com/

Michael [email protected] (703) 354-7700http://www.toobinlaw.com/

Elizabeth Wildhack (703) 237-0095http://www.wildhacklaw.com/

Edward [email protected] (703) 379-0442http://www.zetlinlaw.com/

If you need to create or adjust an orderfor guardianship, conservatorship, orPower of Attorney

http://thearcofnova.org/


http://www.uselderlaw.com/





http://www.nmpattorneys.com/




http://www.sorokolaw.com/




http://www.kellythompsonlaw.com/


http://www.toobinlaw.com/


http://www.wildhacklaw.com/




http://www.zetlinlaw.com/
















58


Autism Society of Northern Virginia

(703) 495-8444 http://www.asnv.org

If your loved one has autism and you’dlike more information on servicesavailable to them

Brain Injury Services (703) 451-8881http://www.braininjurysvcs.com

If your loved one has a brain injury andyou’d l ike more information on servicesavailable to them.

CommunityIntegration Manager

For NVTC-Kelly [email protected](703) 323-4049

State Director-Jae [email protected](804) 371-5384


If you are experiencing trouble relatedto discharge planning and your support team has not been able to resolve theissue

Community ResourceConsultants

See Appendix F for a list of the Region2/Northern Virginia contacts

CRCs provide training and technicalassistance to CSBs, providers, andtraining centers. Contact them if yoursupport team feels extra help is needed.

DBHDS Heidi DixSettlement Agreement Executive

Advisor(804) [email protected]

Lee PriceDirector of the Office of DevelopmentalServices(804) [email protected]


If you feel you’re continuing toexperience significant problems relatedto fulfillment of the terms of thesettlement and you are unable to get assistance from your support team

Down SyndromeAssociation of Northern Virginia

http://www.dsanv.org/ (703) 621-7129

If your loved one has Down syndromeand you’d like more information onservices that may be available to them

Elder Care Consultants (703) 904-0191http://www.eldercc.com/

If you’re interested in hiring a privatecase manager or advocate to look in onyour loved one, help with planning, andadvocate for their needs.

http://www.asnv.org/


http://www.braininjurysvcs.com/








http://www.dsanv.org/


http://www.eldercc.com/











59


Employment Coordinator

Adam Sass (statewide)[email protected](804) 786-1203


If you’re having trouble with yoursupport team when it comes toidentifying integrated employment

opportunities in the community

Fairfax/Falls ChurchCommunity ServicesBoard

(703) 383-8500http://www.fairfaxcounty.gov/csb/

Fairfax/Falls Church residents shouldcall their Support Coordinator about planning for transition, lining upcommunity services, concerns about transition, provider tours, ID Waiverservices

Fairfax/Falls ChurchDepartment of SocialServices

(703) 324-7500http://www.fairfaxcounty.gov/dfs/

Fairfax/Falls Church residents shouldwork with their Long Term CareEligibility Worker regarding their lovedone’s Medicaid eligibility

Family MentorNetwork

Betty Vines, MFP Family ResourceConsultant (804) 786-0618 (office)(804) 240-0180 (cell)[email protected]

Before you transition, consider workingwith another family who has beenthrough the transition process or anarea expert on transition. These trainedvolunteers are willing to meet in person,talk on the phone, or exchange emailsabout your concerns and questions.

Human Rights For NVTC-

Kevin Paluszak (703) 323-2098

State Director-Margaret [email protected](804) 786.3988

http://www.dbhds.virginia.gov/OHR-default.htm

If you feel the human rights of the

person with a disability are beingviolated in any way or have beenviolated



http://www.fairfaxcounty.gov/csb/

















60


Licensing NVTC-Carrie [email protected](540) 785-0745

Anne [email protected](703) 323-2543

Chris Cart [email protected](703) 323-2097

Tina Whitfield [email protected](703) 323-3197

Stephanie [email protected](540) 785-0745

State Director-Les [email protected](804) 786-1747

http://www.dbhds.virginia.gov/OL-default.htm

If you feel that the rules for licensing andcare are not being met by your provideror you have questions about licensingregulations

Moms In Motion (800) [email protected] http://momsinmotion.net/

Service facilitation for the ID Waiver (if you choose to have your loved one livewith you and use consumer directedservices)

START Program See Appendix B for the Region IIContacts

When an individual is having a mentalhealth or behavioral crisis to discusscrisis management. Your support coordinator and/or service providermay contact them on your behalf

Virginia MicroboardAssociation

Linda [email protected] (757)460-1569

For information on how a microboardmay be beneficial or how to get startedin forming a microboard











mailto:%[email protected]




mailto:%[email protected]












61

APPENDIX B- START

VIRGINIA START is a systems-linkage approach to supports for individuals with anintellectual disability and/or developmental disability, and a mental health condition or challenging behavior that is negatively affecting their quality of life.

The underlying philosophy of START is that services will be most effective when everyoneinvolved in supports and treatment is allowed to participate actively in collaborativetreatment planning and service decisions.

START emphasizes the prevention of crises before they occur. This is done through earlyidentification of individuals, development of crisis response plans, training, and technicalassistance.

START offers clinical assessment and support by using the following methods:Training and empowerment for families and caregivers;Effective positive behavior support approaches;Therapeutic tools developed in collaboration with medical, allied health, intellectualdisability and mental health professionals;Community and home based crisis intervention and stabilization supports;A six bed residential therapeutic and planned respite facility; andOptimal utilization of existing resources through system linkages.

Who is eligible for Virginia START? Individuals age 18 and older with an intellectualdisability and/or a developmental disability and a co-occurring behavioral health need or challenging behavior that is affecting their quality of life.

Who should be referred to Virginia START? Reasons for referral may vary. Someexamples of reasons for referral include : individuals at risk of losing their home or job due tobehavioral concerns, have a history of complex medical, behavioral, and/or trauma related issues , have exhibited a significant deterioration in functioning over the past 24 months,have been hospitalized or admitted to a psychiatric hospital or training center, or haveexhibited behavior that resulted in contact with law enforcement or jail.

Who can make a referral to Virginia START? Referrals may be made by individuals andfamilies, current support and medical providers, CSB Support Coordinators/CaseManagers/Clinicians, or other natural supports in a person’s life.

How do I make a referral to Virginia START? See contact information in your region.

When will Virginia START be ready to take referrals? You can make a referral now!



62

Contact Information for Regional START Programs

Region I- Easter Seals UCPSTART Director-Kelly [email protected] 540/259-1028Jarret Stone, [email protected] 919/943-7585HPR I ID Crisis Services Project Manager: Gail Paysour [email protected] 434/970-2148

Region II (Northern Virginia)- Easter Seals UCPSTART Director-Philippe KanePhilippe.kane @eastersealsucp.com 571/409-0377Jarret Stone, [email protected] 919/943-7585HPRII, ID/MH Crisis Services Project Manager: Lyanne Trumbull, [email protected] 703/449-630424 Hour Crisis Line- 855-89-START

Region III-New River Valley Community ServicesSTART Director-Denise Hall, [email protected] 1-855-88-START Fax: (540) 267-3403

Region IV-Richmond Behavioral Health AuthoritySTART Director-Ron [email protected] 1- 855-282-1006 .

Region V- Hampton-Newport NewsCommunity Services BoardSTART Director-Dona M. Sterling-Perdue, [email protected] 1- 855-80-START (855-807-8278)

Virginia Department of Behavioral Health and DevelopmentalServicesState Liaison: Bob Villa, Office of Developmental [email protected] 804/371-4696



APPENDIX C- POST-MOVE MONITORING SCHEDULE

Key- TC= Training Center Staff, OL= Office of Licensing, CSB= Community ServicesBoard Support Coordinator, CRC = Community Resource Consultant, OHR= Office of Human Rights



64

APPENDIX D- LIMITED GUARDIANSHIP/CONSERVATORSHIP AND ALTERNATIVES

Limited Guardianship and Alternatives to Guardianship

Limited Guardian of the Person: The courts can limit or specify the authority and responsibilities of theguardian to specific areas of the individual’s life; such as medical and health care decisions. For example, the courts can maintain specific rights for an individual through a written order like the rightsinvolving voting, marriage, and driving.

Medical Power of Attorney : An agreement that grants an individual the authority to act on someoneelse's behalf for health-related matters. This allows the individual to make decisions about things likemedical treatments, prescriptions, and nursing home arrangements.

Durable Power of Attorney: A durable power of attorney will remain in effect for the person designatedas an individual with the authority to act on someone’s behalf even i f the individual later becomesmentally incapacitated.

General power of attorney: The general power of attorney gives the agent broad power to do almostanything for the principal. However, if the principal is later deemed incapacitated, the General Power of

Attorney is no longer valid.

Representative Payee: A person appointed by the Social Security Administration to manage anindividual’s governmental benefits to pay living expenses and daily needs.

Temporary Guardianship: For specific reasons, a person can be appointed as temporary guardian on atime-limited basis. For example: to assist in moving an individual to a residential placement; to makemedical decisions, etc. Please refer to an attorney for further guidance.

Limited Conservatorship and Alternatives to Conservatorship

Limited Conservatorship : The courts can limit the authority of the conservator to specific areas of theindividual’s life. For example, the sale of a property, establishing a trust, or handling estate matters.Limited conservatorship can also be time-limited.

Trust : An arrangement with a trustee (another person, an attorney, an organization or a financialinstitution) to manage property or assets for the benefit of an individual.

Financial Power of Attorney: An individual appointed to serve as an individual’s agent to makedecisions on their behalf.

General power of attorney: The general power of attorney gives the agent broad power to do almostanything for the principal.

Representative Payee : A person appointed by the Social Security Administration to manage anindividual’s governmental benefits to pay living expenses and daily needs.

Temporary Conservatorship: For specific reasons, a person can be appointed as a temporaryconservator on a time- limited basis. For example: to assist in moving the individual’s assets to another agent; to manage assets of an estate; to make financial decisions regarding buying or selling propertysuch as a home or car; to handle an inheritance, etc.



65

APPENDIX E- DIFFERENCES BETWEEN AUTHORIZEDREPRESENTATIVES AND GUARDIANS

Authorized Representatives and Court Appointed Legal Guardians for Adults in VirginiaSimilarities and Differences*

___________________________________________________________________________________ Mandatory Disclosure: This document contains general information and is not intended as legaladvice. ___________________________________________________________________________________ Generally speaking, both Authorized Representatives (ARs), formally known as Legally Authorized Representatives (LARs), and Court Appointed Guardians (CAGs) are types of Surrogate Decision Makerswho help individuals that need assistance in making life-decisions and/or authorizing consent to releaselegally protected health care and other information. The major difference between ARs/LARs and CAGsis the scope and type of assistance that can be provided and legal safeguards available to ensure thatindividuals at risk (the Clients) are properly protected.

Authorized Representatives (ARs/LARs) 12 VAC35-115 et seq., Administrative Code of Virginia An AR/LAR is a volunteer (usually a family member) who has authority to consent to medical procedures,

treatment and the release of protected medical and treatment information for individuals receivingservices funded, licensed and/or operated by the Department of Behavioral Health & DevelopmentalServices (DBHDS). ARs/LARs are governed by the rules and regulations in the Virginia AdministrativeCode, including Human Rights Regulations (see 12 VAC35-115 et seq.). In an environment operated byDBHDS, which provides a wide array of services and 24-hour per day supports and crisis management,an AR/LAR is a cost-effective tool to help clients who otherwise would have no one to speak on their behalf. However, it is important to note that ARs/LARs have no recognized legal authority in communitysettings that are not under DBHDS jurisdiction. Nor are ARs/LARs permitted to help an individual withother life issues such as housing, transportation, support and safety once outside the jurisdiction of DBHDS. So while ARs/LARs are very effective in certain circumstances, their scope of authority is verylimited.

Court Appointed Guardians (CAGs) 64.2-2000 et seq ., Code of Virginia

A CAG can be authorized by a Circuit Court in Virginia, only after clear and convincing evidence has beenpresented to prove an individual is legally incapacitated and requires assistance. There are many legalsafeguards to ensure that persons appointed to serve as Guardians have a legal duty and responsibilityfor making decisions, when necessary, regarding the incapacitated person’s support, care, health, safety,habilitation, education, therapeutic treatment, transportation, residence and other life decisions dependingon the authority granted by the Circuit Court and outlined in the Guardianship Court Order (see 37.2-1000et seq.). Guardians in Virginia are required to be bonded and must report to the Department of SocialServices annually on the in capacitated person’s well being and treatment. A Guardian in Virginia isconsidered a “Fiduciary” under the law and, unlike a volunteer, cannot resign unless a Circuit Courtallows. A Guardian can also be replaced or substituted or eliminated altogether if the incapacitated adulthas been restored and no longer needs a CAG. Guardianship is a very serious step and is onlyappropriate when there are absolutely no less restrictive alternatives to assist an individual (for moreinformation on alternatives to Guardianship, see the Virginia Department for the Aging website atwww.vda.virginia.gov under topics). Once appointed, a Guardian’s authority is (and must be recognized)in the entire Commonwealth of Virginia and other States as appropriate. Guardianship proceedings arecostly and time-consuming.

*Virginia Public Guardian & Conservator Program – Guidance Document (March 2012)

http://www.vda.virginia.gov/





66

APPENDIX F- COMMUNITY RESOURCE CONSULTANTS

Gail Rheinheimer, Community Resource Manager Training and Technical AssistancePHONE: (540) 981-0697 FAX: (540) 857-6109

[email protected] Region 1

Central VirginiaTraining Center

Region 2Northern VirginiaTraining Center

Region 3Southwest Virginia

Training Center

Region 4Southside Virginia

Training Center

Region 5Southeastern Virginia

Training Center

Eric Williams Barry Seaver Wanda Earp David Meadows Xiomara Apicella

DBHDS CatawbaHospital5525 CatawbaHospital DriveCatawba, VA 24070(540) 375-4248(540) 375-4224 (Fax)

[email protected]

DBHDSP.O. Box 1797Richmond, VA23218-1797(804) 286-9008(804) 286-9011

(Fax)[email protected]

DBHDS870 Bonham RoadBristol, VA 24201(276) 669-7762(276) 669-3306(Fax)[email protected]

DBHDS CentralOfficeP.O. Box 1797Richmond, VA23218-1797(804) 786-5813(804) 786-5855 (Fax)[email protected]

DBHDSP.O. Box 6243Portsmouth, VA23703(757) 434-5328

(757) 484-4047 (Fax)[email protected]

Harrisonburg-RockinghamNorthwesternRappahannock-RapidanValley

ArlingtonMiddle Peninsula-Northern Neck*Prince WilliamRappahannock

Area**outside region

AlleghanyHighlandsBlue RidgeCumberlandHighlandsNew River Valley

Hanover HenricoRichmondSouthside

Eastern ShorePortsmouthVirginia BeachWestern Tidewater

Kathy Witt Jen Kurtz Karen Poe Andrea Coleman Michelle Guziewicz

DBHDS120 TremoughDriveWytheville, VA24382(276) 223-3723(276) 223-3295(Fax)[email protected]

DBHDSP.O. Box 1797Richmond, VA

23218-1797(804) 461-0256

[email protected]

DBHDS115 WilkinsonDriveHillsville, VA24343(276)733-5176(276)728-3745

(Fax)[email protected]

DBHDS CentralOfficeP.O. Box 1797Richmond, VA23218-1797(804) 371-2583(804) 692-0077 (Fax)[email protected]

DBHDSP.O. Box 1797Richmond, VA23218-1797(804) 286-9008(804) 286-9011 (Fax)

[email protected]

Central VirginiaRegion 10Rockbridge

AlexandriaFairfax-Falls ChurchLoudoun

Danville-PittsylvaniaDickensonMt. RogersPiedmontPlanning District 1

ChesterfieldCrossroadsDistrict 19Goochland-Powhatan

ChesapeakeColonialHampton-NewportNewsNorfolk
























































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