2018 Annual Business Meeting - The Arc...resume consideration of ... No . Yes . No . No . Majority ....

THE ARC OF THE UNITED STATES

November 9, 2018

2018 Annual Business Meeting

Friday November 9, 2018

1:45 pm – 3:45 pm

MISSION STATEMENT

The Arc promotes and protects the human rights of people

with intellectual and developmental disabilities and actively

supports their full inclusion and participation in the

community throughout their lifetimes.

Table of Contents

Section 1 - Business Meeting Agenda............................................................. 2

Section 2 - Operating Rules......................................................................... 5

Section 3 - Meeting Protocols...................................................................... 8

Section 4 - 2017 Business Meeting Minutes...................................................... 14

2017 Meeting Minutes....................................................................... 15

Presidents Report............................................................................ 17

CEO Report.................................................................................... 18

Steering Committee Report................................................................ 22

Section 5 - 2018 Slate of Nominees............................................................... 24

Board Development Committee Report................................................... 25

Slate of Candidates Nominated for Election............................................. 28

Candidate Biographies....................................................................... 31

Section 6 Postion Statements for Action......................................................... 40

Letter from President McMillan............................................................ 41

Education...................................................................................... 42

Self-Determination........................................................................... 48

Business Meeting Kit - Page 1


November 9, 2018

Business Meeting Agenda

Section 1


Elise McMillan, President

Peter Berns, CEO

Carol Wheeler, Secretary





Peter Berns, Chief Executive Officer

Carrie Hobbs-Guiden, Chair of NCE

Ron Brown, Chair Board Development Committee

1:45 pm – 1:55 pm Call to Order & Welcome

Review of Keypad Voting Procedures

Establishment of Quorum

Review of Business Meeting Operating Rules

Appointments – Timekeeper

Annual Business Meeting Minutes

1:55 pm – 2:05 pm President’s Report

2:05 pm – 2:15 pm Chief Executive’s Report

2:15 pm – 2:20 pm NCE Report

2:20 pm – 2:30 pm Board Development Committee Report & Elections

Presentation of Slate of Nominees

2:30 pm – 3:00 pm Presentation of Position Statements Fred Misilo, Chair

Education Self-Determination

Fred Misilo, Chair Policy and Positions Committee

TBD President - Elect


3:00 pm – 3:30 pm Policy and Positions Committee Listening Session: Public Policy Agenda

3:30 pm – 3:40 pm Remarks from the Incoming President

3:40 pm – 3:45 pm Announcements

Adjourn Elise McMillan, President

ANNUAL BUSINESS MEETING AGENDA Friday, November 9, 2018

1:45 pm – 3:45 pm Gaylord Opryland Resort and Convention Center


November 9, 2018

Operating Rules

Section 2


PROPOSED BUSINESS MEETING OPERATING RULES

Please note that The Arc's Bylaws contains the procedures for submitting and adopting amendments to the Bylaws and procedures for submitting and adopting substantive resolutions.

1. VOTING BODY: The voting body consists of Chapters, by their Chapter votingrepresentatives or by proxy votes submitted.

2. QUORUM: A quorum for the transaction of business at the annual meeting of the Membersand at any special meeting of Members shall consist of those Chapters present in person, orby proxy, holding not less than one‐half (1/2) of the total number of votes held by all of theChapters.

3. SEATING: There are no voting representatives or Chapter designated seating; however, allChapter voting representatives must wear their name badge.

4. PRIVILEGE OF THE FLOOR: Unless otherwise decided by a majority of the Chapter VotingRepresentatives, the Chair shall recognize only the following person(s) for the purpose ofdiscussion: Chapter Voting Representatives, State Presidents, National Board Members,National Committee Chairpersons, and National Past Presidents.

5. RECOGNITION OF SPEAKERS: To be recognized by the Chair, a person who wants to speakmust first go to the nearest available microphone, stating the speaker's name, title (ifapplicable), state and local chapter. A member wishing to be recognized by the Chair forany other legitimate purpose may use the nearest available microphone and state thespeaker's name, title (if applicable), state and local chapter, and for what purpose they wishto be recognized.

6. SPEECH LIMITS:a. Each person may speak for up to two minutes when recognized by the Chair.b. A Chapter voting representative wishing to speak a second time on a motion yields to

anyone who has not yet spoken once on that motion.c. No one may speak more than twice on a subject without consent of the assembly.d. Discussion will be closed and the vote taken on all pending motions at the end of

10 minutes.e. The Chair may make accommodations to meet the needs of individual speakers.

7. CLOSING DEBATE: Debate or discussion shall be closed by general consent (i.e., noobjection) or adoption by a two‐thirds (2/3) vote of the non‐debatable motion to closedebate.


8. NOMINATIONS:a. All nominations shall be held in accordance with the bylaws of The Arc.b. If there is more than one candidate for an elected position, all candidates will be given

two (2) minutes to address the delegate body.

9. ELECTIONS:a. Officers and Directors. Each officer and director must be elected by a majority of

the votes cast. When there is more than one nominee for a position, the election shall be by electronic ballot. If no candidate receives a majority of votes cast on the first ballot, the election shall continue until a candidate receives a majority vote. If there is only one nominee for the director or officer position, the Chair shall declare the nominee elected by acclamation.

10. PARLIAMENTARY AUTHORITY: The rules contained in the current edition of The Standard Code of Parliamentary Procedure (Sturgis) shall govern the annual business meeting in all cases to which they are applicable and in which they are not inconsistent with the Bylaws, these business meeting rules or any other rules of the Association.

11. Per the bylaws of The Arc, The President of The Arc shall have the power to appoint a parliamentarian and shall interpret these Bylaws when a question arises as to the meaning of any part of it. The President’s decision shall be final, unless overruled by a vote of two‐thirds (2/3) of all the votes held and entitled to be cast by Chapters of The Arc that are present in person or by proxy.



November 9, 2018

Meeting Protocols

Section 3


NOTICE

Notice pursuant to MD Corps & Assoc Code Ann, § 5-206: If a quorum is not present at

the annual business meeting, and a majority of those present vote to call an

additional meeting, then an additional meeting shall be held upon no less than 15

days notice of time, place and purpose. At such additional meeting, those present in

person or by proxy shall constitute a quorum and a majority may take any action that

otherwise could be taken at this annual meeting.


Speaking the Member’s Language

Seeking Recognition

“Mr. (Madam) Chairman” -or-“Mr. (Madam) President”

Making Motions

On your own: “I move that…”

Seconding Motions

“Second!” NOTE: you do not need to be recognized to second a motion.

Making Amendments

“I move to amend the motion by … Use one of the three following methods, describing which words to change:

. . .Striking the following words(s): …” . . .Adding the following words(s): …” . . .Striking the words(s): - AND inserting the word(s):…”

Make sure the motion reads correctly if amended with your proposal.

Closing Debate

“I move to close debate on …”

Voting by General Consent

If you object, you do not need to be recognized to say: “I object!” NOTE: you also do not need to give a reason.

If you agree, remain silent when the chair calls for objections.

Protecting the Rules

“Point of Order!”

You protect the rules by raising a point of order. You do not need to be recognized. Once you have called out as above, be prepared to state what rule is being violated.

Ask a Procedural Question

“Parliamentary Inquiry!”

This motion is used to ask procedural questions, which are answered by the chair or parliamentarian. For example, you can tell the chair what you want to do and ask which motion would be appropriate.

Seek Information About the Motion

“I have a question about the motion.”

If you need to know more about a motion that is on the floor, you can be recognized to ask your question. Don’t try to debate or make comments; this special recognition is for getting information, not giving it.


Making Motions for Members

1. Member states motion.Clearly state your proposal – what you say is what theydebate. You may be asked to write it down on a form.

2. Another member seconds.If you did not make the motion, but agree it should beconsidered, say “second!”

3. Chair states motion.Make sure the chair repeats the motion accuratelybefore beginning discussion.

4. Members debate motion.State your opinion with decorum, make other motions asappropriate and listen carefully to other opinions.

5. Chair takes vote.Cast your vote in the best interest of the association asa whole.

6. Chair announces result and effect.Listen to the chair announce the result of the vote.Respect and support the group decision.


Parliamentary Motions Guide Based on Sturgis Standard Code of Parliamentary Procedure (4th Ed.)

Motions are listed in order of precedence. A motion can be introduced if it is higher than the pending motion.

YOU WANT TO: YOU SAY: INTERRUPT? 2ND? DEBATE? AMEND? VOTE?

(77) Close meeting I move that we adjourn

No Yes Yes Yes Majority

(75) Take break I move to recess for

No Yes Yes Yes Majority

(72) Registercomplaint

I rise to a question of privilege Yes No No No None

(68) Lay asidetemporarily

I move that the main motion be postponed temporarily

No Yes No No Varies

(65) Close debateand voteimmediately

I move to close debate No Yes No No 2/3

(62) Limit orextend debate

I move to limit debate to ... No Yes Yes Yes 2/3

(58) Postpone tocertain time

I move to postpone the motion until ... No Yes Yes Yes Majority

(55) Refer tocommittee

I move to refer the motion to … No Yes Yes Yes Majority

(47) Modify wordingof motion

I move to amend the motion by ... No Yes Yes Yes Majority

(p 32) Bring business before assembly (a main motion)

I move that … No Yes Yes Yes Majority


Parliamentary Motions GuideBased on Sturgis Standard Code of Parliamentary Procedure (4th Ed.)

Incidental Motions - no order of precedence. Arise incidentally and decided immediately.

YOU WANT TO: YOU SAY: INTERRUPT 2ND? DEBATE? AMEND? VOTE?

(82) Submit matterto assembly

I appeal the decision of the chair

Yes Yes Yes No Majority

(84) Suspend rulesI move to suspend the rule requiring No Yes No No 2/3

(87) Enforce rules Point of order Yes No No No None (90) Parliamentary

questionParliamentary inquiry Yes No No No None

(94) Withdrawmotion

I wish to withdraw my motion Yes No No No None

(96) Divide motionI request that the motion be divided No No No No None

(99) Demand risingvote

I call for a division of the assembly

Yes No No No None

Restorative Main Motions - no order of precedence. Introduce only when nothing else pending. (36) Amend

previousaction

I move to amend the motion … No Yes Yes Yes Varies

(38) Reconsidermotion

I move to reconsider Yes Yes Yes No Majority

(42) Cancel action I move to rescind...

No Yes Yes No Majority

(44) Take fromtable

I move to resume consideration of ...

No Yes No No Majority



November 9, 2018

2017 Business Meeting Minutes

Section 4


Minutes of the 68th Annual Convention San Diego, CA

Friday, November 3rd, 2017

Call to Order The Business Meeting of the 68th Annual Convention of The Arc was called to order by President Elise McMillan at 12:18pm.

Welcome President McMillan welcomed the visitors and guests to the Business portion of the Convention and introduced the other members at the head table: Fred Misilo, Vice President; Carol Wheeler, Secretary; Doug Church, Treasurer; Ronald Brown, Immediate Past President; Peter Berns, Chief Executive Officer; and Carrie Hobbs-Guiden, NCE Steering Committee Chair.

Credentials Report Secretary Wheeler read the credentialing report: a total of 1392 of 3589 possible votes had registered at the convention.

Establishment of Quorum

Secretary Wheeler declared that a quorum was not present.

Review of Business Meeting Operating Rules

President McMillan informed the attendees that the Operating Rules have been pre-circulated, and the chair will use them as a guide for conducting today’s meeting.

Review of Business Meeting Agenda

President McMIllian informed the attendees that the meetings agenda has bee pre-circulated and the Chair will follow this order of business.

Appointments President McMillan announced that Secretary Wheeler was appointed as timekeeper.

Annual Business Meeting Minutes

President McMillan explained the minutes of the 2016 Annual Business Meeting have been published and asked if there are any questions or corrections. No one approached the microphone.

President’s Report Please See Attached President’s Report

Chief Executive Officer’s Report

Please See Attached CEO Report

NCE Report Please See Attached NCE Report

Listening Session: Public Policy Position Statements

President McMillan welcomed Fred Misilo, Chair of Policy and Positions Committee to the podium. The Chairs held a listening session on what chapters felt would be important to include in the revisions on the position statements for Education and Self-Determination.

Listening Session: General Input from Chapters

President McMillan held a thirty-minute listening session on General Input from Chapters. The session covered topics including access to transportation; the FINDS Survey, and work to Transform The Arc’s Online Advocacy Presence.


New Business President McMillan stated that there was no new business.

Announcements President McMillan asked if there was any announcement before the meeting is adjourned.

Adjourn There being no further business, President McMillan adjourned the 68th Annual Convention Business Meeting at 1:47pm.

Approved:

Carol Wheeler, Secretary Date


The Arc US President’s Report November 2017

Welcome to Convention

Welcome to San Diego and The Arc spending US Convention. My thanks to board members, committee members, volunteers, Peter and the staff who have made this convention possible. Even though planning and implementation of the Convention takes a great deal of time, that doesn’t mean the business of The Arc in many other areas slows down. A few updates on this incredible year:

Are we daring to hope?

Our network faced many challenges this year with the impact of hurricanes that devastated many states and territories. Through all the challenges, The Arc’s network remained strong, unified and resilient. I appreciate the stories that many of you have shared.

The hurricanes left a path of destruction. Many of The Arc’s chapters in Texas, Louisiana, and Florida sustained damage and the families that rely on those chapters ended up turning to them in their hour of need. Our chapter staff and volunteers in impacted areas worked over time to support those who were reliant on them. Even more inspiring was the outpouring of support from other chapters across the country in the form of donations, calls, and emails.

Are we daring to build community?

On Thursday morning The Arc’s Board Diversity Committee held a breakfast to welcome diverse scholarship recipients to The Arc’s National Convention. Gatherings like that don’t just happen. They take planning and determination by board members, volunteers and staff. My thanks go to Kelly, Mary, and other board members who volunteered when asked at our board meeting in St. Louis. Working with Peter, Dawn and staff, they have put together several activities that will spotlight our commitment to diversity.

In addition to awarding scholarships for first time attendees, the group had planned the breakfast, a Board Committee Meeting while we’re in San Diego and a breakout session, Faces of Disparity. More details can be found in your Convention materials.

Are we daring to grow?

Finally, we can’t do any of the activities mentioned above or those in our Strategic Plan if we don’t have the resources to support our work. One way of increasing resources was the dues increase that will take effect Jan. 1. My thanks to Doug Church and his committee, Peter and the staff in helping us plan for this needed increase.

A big thanks to Randy and Jose and their committee who have worked this year to launch our Resource Development Committee. Their report and the discussion we’ll have at the board meeting highlight the work that they’ve already done and the impressive plans they have for this group. However, without support and ideas from all of us, they won’t be nearly as successful.

Finally, thank you again for allowing me to serve as your board president. It’s hard to believe that it’s been a year since we were together in Orlando. I have appreciated a chance to work with all of you and I know I speak for all of the board of directors when I thank you for your service and look forward to making 2018 even better.


2017 Annual Business Meeting

Chief Executive Officer’s Report November 3, 2017

Good Afternoon. Thank you for attending the Annual Meeting of chapters of The Arc.

Before I proceed with my remarks, I want to call to your attention one change we’ve made in the Agenda for the annual meeting. This year, you may have noticed that we do not have a separate Treasurer’s Report on the Agenda. The reason is two fold. First, we wanted to allow more time on the agenda to hear from you during the listening sessions later in the program. Second, the end of fiscal year 2016 information that would typically be reported at the annual meeting is already ten months old, and was included in The Arc’s annual report which was distributed previously. It is also available on The Arc’s website.

So while we won’t have a formal presentation of the Treasurer’s Report, as you saw in the Annual Report, The Arc was in sound financial condition at the end of FY 2016. Both the Treasurer, Doug Church, and I will be available after the business meeting or later during the Convention, to answer any questions you may have about the organization’s financial condition.

So now, let me turn to the remarks I would like to share with you today.

It has been quite a year since we last got together at the 2016 National Convention in Orlando, FL. Little did we know at that time that we would soon have a new Congress and a new Administration both of which would make it among their top priorities to dismantle everything that The Arc – that we, collectively, worked to build over the past 67 years.

All of the essential programs, services and supports for people with intellectual and developmental disabilities and their families – Medicaid, the Affordable Care Act and supplemental Security Income – all were on the chopping block.

They proposed to cap and cut Medicaid, or convert it to block grants, to roll back the Medicaid expansion, to allow states to take away the protections for pre-existing conditions and other consumer protections under the Affordable Care Act. If enacted, this would have resulted in billions of dollars lost in funding for home and community based services, in many low-income family members and direct support workers losing their health insurance coverage entirely, and others having to pay more for less coverage.


Faced with this threat, we had to rally like never before. And rally we did – and I want to thank you for your advocacy!

Protecting Medicaid funding for home and community based services, and basic income supports through SSI and the Social Security Disability program, has been the national office’s top priority this year. And we know it has been a top priority for you, our state and local chapter leaders, and for the individuals and families you serve.

Together, we stood strong in the face of unprecedented threats to these critical programs, organizing and mobilizing across the country. Self-advocates, parents, sibling, board members, chapter staff, coalition partners and community members visited their members of Congress, made calls, sent emails – they spoke truth to power.

At the national office, we viewed this a fight for the independence, autonomy and, in some cases, the lives of people with I/DD and for the very existence of chapters of The Arc. We didn’t hesitate to dedicate all available resources to the cause … and more.

1. We hired a Director of Advocacy & Mobilization, Claire Manning, to modernizeour approach to online engagement and lead the campaign.

2. We gathered, vetted and shared the stories of people with I/DD – lifting theirvoices so experiences of real people is front and center before all media.

3. We trained new spokespersons – especially people with I/DD – to speak to themedia and decision makers at rallies and in face-to-face interviews;

4. We flew and bussed families to Washington to share their stories directly withelected officials

5. We produced several short videos featuring families and individuals talkingabout the importance of Medicaid, and these videos have been viewed morethan two million times!

6. We upgraded and improved our tools for activists, including providing recesstoolkits and other resources to chapters, supporting your efforts to mobilizeour constituents to reach out to and educate elected officials and opinionleaders

7. We used paid social media to target our messages to the members of Congresswho were the swing votes.

And together we claimed victory – at least for now. But, as Marty Ford and our public policy team described at the general session earlier the fight is far from over!

As this fight was underway, we also studied with interest what other major advocacy and civil rights organizations were doing and how they were faring, and how the public responded.


We watched Planned Parenthood, an organization for which all federal funding was threatened, in a matter of months attracted more than 600,000 new donors and more than 36,000 volunteers.

We saw the ACLU raise $24 million in the first three days after the travel ban was imposed, and more than $80 million over a six-month period.

We saw the Sierra Club report that it has tripled the number of its monthly donors.

Meals on Wheels reported a 50 fold increase in daily donations after the Administration’s proposed cuts to its funding.

We asked ourselves several questions –

-aren’t the challenges our constituents face as serious as the travel ban,-are the funding cuts our community faces any less draconian then those facedby Planned Parenthood or Meals on Wheel-why is it that we’re not having people rally to our cause as is happening withthese other organizations and what can we do about it,-can The Arc build a powerful and effective online movement in the model ofthe highest performing online movements in the country, such as the ACLU andPlanned parenthood,

To answer these questions, we engaged Kivvit, a major public affairs and digital strategy firm to conduct a soup to nuts audit of our communications and digital organizing efforts and help us figure this out.

In the last few minutes I have with you today, I would like to share with you some of their recommendations.

The good news is that Kivvit concluded that we can do this – The Arc can build a powerful and effective online movement in the model of the highest performing online movements in the country.

According to Kivvit, we have the right mix of capabilities, commitment, and passion to be successful if we make the right moves and investments in the coming months and years. Among our strengths they identified:

• The fact that movement building is part of our history and identity• Our national reach• Our subject matter expertise• The self-advocates, parents and siblings we bring to the table• Our openness to experimentation and to using data to inform decisions,• And the belief we have in our potential.


Kivvit shared with us several recommendations about our structure, systems and staffing that we need to address to move ahead with this next stage of transforming The Arc, and included in their recommendations is that we deepen the collaborative working relationships we have among national, state and local components of The Arc. In keeping with the grassroots nature and identity that is The Arc, Kivvit advised that we need to develop services and tools that will empower you, our chapters, to organize online.

So in 2018 and beyond, we will be coming to you and asking you to work together with us on this next stage of building The Arc into the advocacy and fundraising powerhouse we all want and need it to be.

• We will be inviting your input about revamping The Arc’s website, includingmaking this and other communications vehicles more useful to you,

• We will be asking for your advice about what we can do to empower youradvocacy.

• We will be looking for chapters to participate in piloting new online organizingstrategies as they are developed.

• We will be reaching out to digital savvy chapter staff to help bring thestrategies to life, participating in developing new tools, resources and servicesfor the field and to plan and support their implementation.

• We will be developing new in-person and online training opportunities, andcommunications vehicles, to take bring the new online movement building toscale.

• We will be asking you what introductions you can broker that will help us buildrelationships in diverse communities.

And, most importantly, we will immediately start using these new tools to rack up more successes for people with intellectual and developmental disabilities and their families.

Eight years ago, as we were about to roll out our new, ten-year, Strategic Framework for the Future of The Arc, I stood before you and said that The Arc was like a Sleeping Giant….

Together, we awakened that Sleeping Giant – and just in the nick of time.

Now it is up to all of us to build the power we need to achieve the vision of people with intellectual and developmental disabilities being included as full members of the community, and of The Arc as the nation’s leading advocate for all people with I/DD and their families and the premier provider of the supports and services that people want and need.

We look forward to continuing the journey with you.

Thank you.


National Conference of Executives of The Arc (NCE) Report

Summer Leadership Institute

Despite record-breaking heat in St. Louis and a weather emergency that forced the cancellation of our key note speaker, this year’s Summer Leadership Institute drew 188 registered attendees. One hundred of those were first-timers, thirty-five were from external organizations and we even had one attendee from the U.S. Virgin Islands! Closing keynote Joe Macbeth from the National Alliance of Direct Support Professionals (NADSP) drew rave reviews as the closing keynote and sessions on dementia in people with I/DD, ramping up advocacy efforts, developing criminal justice programs and special education advocacy programs drew were popular. The evening events were well attended, especially the Cardinals vs. Rockies game. We had our own private suites with plenty of food and air conditioning. The evening at the glass factory offered great barbecue and an opportunity to see artisans at work. Both events offered opportunities to engage with co-workers in a relaxed environment. The hotel was absolutely amazing – who knew such luxury could be so reasonably priced? The wonderful staff and accommodations added to the enjoyment of the event. Plans are already in the works for SLI 2018 – in Philadelphia, Pennsylvania. Many thanks to Chris and Karen, Vice-Chairs of NCE, Dawn, Robin and everyone else who helped make SLI 2017 a success.

Professional Development Seminar

As of this writing, 115 people have registered for Professional Development Seminar at The Arc National Convention. Chris Littlefield, Founder of Acknowledgement Works, will conduct “The Engagement Clinic” and we are excited to have him! We have been promoting PDS since the summer and will continue our efforts. Leadership have been encouraged to bring their HR staff or others on their team and we have offered discounts for additional staff to attend.

Awards Task Group

The NCE Awards Committee, under the leadership of Jon Meyers, have made their choices for the award winners for 2017. Below are the winners:

• Diversity & Cultural Competence Achievement – John Nash, ExecutiveDirector, The Arc of North Carolina, NC

• Executive Excellence – Thomas Kendziorski, Executive Director, The Arc ofOakland County, MI AND Kim Dodson, Executive Director, The Arc ofIndiana, IN


• Exemplary Career Leadership – Marijo Rymer, Executive Director, The Arc ofColorado, CO

• Exemplary Mentor – Penny Spillman, Executive Director, Y.E.S. The Arc, AZ• Lifetime Achievement – Mary Gonzalez, Founder, Gamaliel Foundation, IL• Rising Star – Rob Malone, Executive Director, The Arc of Prince George’s

County, MD• Outstanding Professional Achievement – Kevin Crosley, Executive Director,

The Arc Herkimer, NY• Program Innovation – Mary Van Haneghan, Executive Director, The Arc of the

Capital Area

I hope you were able to attend the Luncheon in San Diego to honor them in person!

Silent Auction Task Group

The Silent Auction Task Group, under the leadership of Dan Stewart, Carrie Hobbs Guiden, Gary Horner and Karen Shoemaker, have been hard at work making this year’s silent auction the best yet. “Bigger, better, more” is once again this year’s theme. New this year is on-line bidding component. People will be able to track bidding on-line and make bids on-line, so you don’t have to physically be in the silent auction space to up your bid. You don’t even have to be at convention to participate! This year, up to 10% of the funds raised will go to help chapters impacted by the hurricanes and other natural disasters. The balance will go to fund scholarships for Execs and Next Generation leaders to attend SLI or PDS. Items available for bid include hotel stays, gift baskets, art, jewelry, event tickets, one-of-a-kind items, gift cards, autographed memorabilia and more. Join in the fun and register to bid on items. Help NCE make this our most successful year yet!

Lastly, many thanks to Dawn Cooper for her ongoing support of NCE. She keeps us organized!

Submitted by: Carrie Hobbs Guiden NCE Steering Committee Chair



November 9, 2018

2018 Slate of Nominees

Section 5


Board Development Committee Report

July 13, 2018

________________________________________________________________________ The Board Development Committee is pleased to report that it has completed the process of preparing the slate of four Officers and seven Directors for election to the Board of Directors at the National Convention in November 2018. The Committee will be recommending two candidates to the incoming Board President for nomination to and election by the Board of Directors at the first board meeting after the convention which is scheduled for January 2019.

The Committee is confident that it has identified and selected a group of candidates that, collectively, has the knowledge, skills and expertise to meet The Arc’s leadership needs into the future as the organization continues to implement the Strategic Framework for the Future of The Arc, 2010 – 2019.

The Committee has engaged in an exhaustive process in the course of preparing the slate and additional recommendations. This process unfolded over the course of more than a year, with 14 audio/web conference calls although the largest amount of work done and time spent was in between the meetings. In the course of this process, the Committee did the following:

1. Reviewed the “Board Roles and Responsibilities” and “Responsibilities of IndividualBoard Members” and updated them for the 2018-2020 cycle.

2. Developed Nominating Process Workplan.3. Reviewed and updated “Factors/Criteria Relevant to Board Composition,” a list of

personal characteristics, geographic considerations, knowledge/skills and expertiseand other factors that would be important to the success of the board in leading theorganization.

4. Conducted Board Composition Analysis. The current composition of the board wasreviewed, with information provided by board members, to determine which of thefactors/criteria are already represented on the board.

5. Developed “Statement of Board Nominating Priorities.” Based on the BoardComposition Analysis, the Committee identified those Factors/Criteria that were notpresent in the current board composition and established nominating priorities thatincluded priority factors, including an emphasis on achieving greater gender, ethnic,racial, religious, and age diversity on the board.

6. Developed “Board Prospectus.” The Committee compiled the results of its work into aBoard Prospectus that could be used as part of the process of identifying potentialcandidates for the Board. The Prospectus included a form that could be used tonominate an individual for the Board or for self-nominations.

7. Developed “Outreach Plan” and conducted outreach. The Committee first developedan outreach plan and then conducted extensive outreach to identify potential


candidates to serve on the Board of Directors. The outreach process included disseminating the Board Prospectus broadly via email broadcast and online to hundreds of people and organizations to see if they could identify other individuals that might be a good fit for The Arc’s board. Targeted telephone and email follow-up contacts were made.

8. Developed Potential Candidates Pool. The outreach process, described above, resultedin identifying an initial list of 28 people who were recommended as potentialcandidates for the Board of Directors, including 3 incumbents.

9. Priority Scoring of Candidates. Based on information obtained during the outreachprocess, as well as other information available from public sources, a matrix wascreated to track information about each candidate in relation to the factors/criteriathat had previously been identified as important for the Board. A point system wasused to track how many of the priority factors/criteria each candidate met. Currentboard members whose terms were expiring, and who were eligible to be re-nominated, were included on the matrix and evaluated along with the potentialcandidates.

10. Preparation of Officers Slate. The Committee reviewed the performance of currentofficers and members of the Board of Directors and identified a short-list of persons topossibly serve as officers. Potential officer nominees were interviewed by members ofthe Committee, utilizing a structured interview format. Input was also sought from thecurrent Board President on each of the potential officer candidates.

11. Candidate Interviewing. The Committee culled the list of potential candidates down toabout 12 people who appeared to be the most promising candidates, including currentboard members who were being considered for re-nomination. Committee membersutilized an in-depth interview questionnaire and all individuals were contacted (viatelephone) to elicit their responses. Additional contacts were made with candidates,with the individuals that first suggested their names, and with other parties as neededto gain a full understanding of each person’s potential board service. Input was alsosought from the current Board President on each of the potential officer candidates.

12. Selection of Candidates. All of the information on each candidate (e.g. nominationform, resume, interview notes, online bios, etc.) was compiled into a single documentfor the candidate to be used by committee members in the course of theirdeliberations. The information was also used to review and update the priority scoringon each candidate. The Committee then engaged in extensive deliberations andselected the individuals to be included on: a) the slate of nominees for election, and(b) a recommended list for the incoming President.

13. Debriefing. In the coming weeks the Committee will meet to debrief the process andto compile information and suggestions that it will pass on to the incoming committeechairperson.

The final group of board candidates meets many, but not all, of the priorities we established for this nominating cycle. The BDC made progress in terms of the priorities relating to age, siblings, parents, geographic location, religious diversity, and ethnic diversity.


As you can see, this year’s nominating process was very comprehensive and the BDC members spent many hours assembling as much information as feasible to make certain the final slate would complement and enhance the future board composition.

I cannot stress enough the amount of time and effort the BDC members expended throughout this lengthy process. Each member was meticulous, conscientious and thorough; they all had provided well-thought out comments and suggestions throughout the whole process. I am honored to have had the opportunity to work with this group of amazing people. It is a pleasure to share with you the results of our work. The slate appears below. Brief biographical information on each individual is also attached.

Final Slate Officers Directors Continuing to 2020

President Fred Misilo Kruti Acharya

Vice President Carol Wheeler Grace Francis

Treasurer Hugh Evans Connie Garner

Secretary Doug Church Neil Hawkins

Immediate Past President Elise McMillan Christopher Metzler John Muller

Directors (Chapter Elected) Ken Oakes Kelly Piacenti Faye Tate Jose Velasco

NCE Representatives Incoming NCE Steering

Hussain Ismail Laura Kennedy Chloe Rothschild Mitch Routon Kathleen Stauffer

Directors (Board Elected) Committee Chair (TBD)

Dena Gassner Carrie Hobbs-Guiden

Mary Gonzales

Board Development Committee

Ron Brown, Chair

Tim Hornbecker Emily Kane Tonya Kelly Jennifer McClure

Marijo Rymer Dan Strick John Shouse Faye Tate


Slate of Candidates Nominated for Election by Chapters of The Arc

OFFICERS PRESIDENT

FRED MISILO Northborough, MA

VICE-PRESIDENT

CAROL WHEELER Washington, DC

SECRETARY

DOUG CHURCH Oak Hill, VA

TREASURER

HUGH EVANS Baltimore, MD

DIRECTORS

LAURA KENNEDY Staten Island, NY

CHLOE ROTHSCHILD Sylvania, OH

MITCH ROUTON Colorado Springs, CO

HUSSAIN ISMAIL Brooklyn, NY

KATHLEEN STAUFFER (renewing member)

Mystic, CT


Additional Candidates Recommended for Nomination by the President and

Election by the Board of Directors

DIRECTORS

DENA GASSNER (renewing member)

Mineola, NY

MARY GONZALES (renewing member)

Chicago, IL


CONTINUING BOARD MEMBERS

TERMS END IN 2020

DR. KRUTI ACHARYA Chicago, IL

DR. GRACE FRANCIS Fairfax, VA

CONNIE GARNER Washington, DC

DR. NEIL HAWKINS Midland, MI

CARRIE HOBBS GUIDEN Nashville, TN

ELISE MCMILLIAN Nashville, TN

DR. CHRISTOPHER METZLER West Palm Beach, FL

JOHN MULLER Milwaukee, WI

KENNETH OAKS Philadelphia, PA

KELLY PIACENTI Chester, NJ

VALENCIA FAYE TATE Denver, CO

JOSE VELASCO Austin, TX


Board of Directors - Candidate Biographies 2018

Officers

Fred Misilo – President Fred Misilo has been a national board member since 2012 and current serves as President of the board of The Arc of the United States. He has served as the chair of the Policy and Positions Committee. He has served on the Legal Advocacy Subcommittee and on the Ad Hoc Committee on Planned Communities and Other Residential Alternatives for People with I/DD. He is also the Immediate Past President of The Arc of Massachusetts and a longstanding board member of that chapter. He has a long history of advocacy within the legislative and executive branches of Massachusetts government, including the position of Deputy Commissioner of the Massachusetts Department of Developmental Services. Fred has devoted 37 years to The Arc’s mission and looks forward to continuing his service on the national board. Fred is an Officer and Chair of the Trust and Estate Department and Chair of the Elder Law and Special Needs Practice Group at the law firm of Fletcher Tilton PC.

Carol Wheeler – Vice President Carol Wheeler has been a national board member since 2012 and co-chaired the Diversity Committee. She served on the President’s Committee for People with Intellectual Disabilities (PCPID) from 2011-13 and is a founding member of the Leadership Committee for Mason LIFE (a ground-breaking post-secondary program for I/DD students at George Mason University). A long-time Washingtonian, she has worked as a congressional office manager on Capitol Hill, Liaison for Women in the Carter White House, Executive Director of the bi-partisan Women’s Campaign Fund, and Vice President for Government Affairs at the National Association of Broadcasters. Her volunteer work has included founding and coordinating the Washington chapter of Project Children, co-chairing a city-wide community action organization, co-chairing the Honorary Board of nationally recognized provider of services to homeless women, and chairing a community ‘Friends’ group for a local elementary school. She founded and

served as board chair of the Washington-Ireland Program for Service and Leadership and serves on the board of the South Africa-Washington International Program, organizations that identify, inspire and support emerging young leaders who are working to bring reconciliation and prosperity to post-conflict communities. Carol is the mother of a young adult with Williams syndrome.


Doug Church – Secretary Doug Church has been a national board member since 2010. He has served on the Board Development Committee and Budget, Finance, & Audit Committee and was previous co-chair of the Resource Development Committee. In addition to his service at the national level, he’s also an active volunteer at the local level who has served on the board of The Arc of Northern Virginia and as President of The Arc of Northern Virginia Foundation. Doug is a banker, with more than 30 years’ experience in Northern Virginia and the markets served by First Virginia Bank, Inc. He currently holds the position of Chairman of Virginia Heritage Bank, an institution that has grown to an $11 billion corporation during Doug’s tenure. He is the father of an adult son with an intellectual disability.

Hugh M. Evans III – Treasurer Hugh Evans has been a member of the board of The Arc of the United States since 2010, and he continues to serve on the Budget, Finance, and Audit Committee. He remains active at the local level through his membership in The Arc of Baltimore. Hugh is a Past President of the Board of Directors of V-LINC, a nonprofit organization that focuses on promoting independence for people with disabilities through the use of assistive technology. He also serves on the Board of Trustees of Catholic Charities of Baltimore. He has extensive experience in investment management, financial management, and organizational development, working with both large and small companies and nonprofit organizations. He is the Vice President of Corporate Development and Ventures at 3D Systems, a leading provider of 3D printing. Hugh is the father of a young daughter with Trisomy 21.

Elise McMillan – Immediate Past President

Elise McMillan currently serves as the Immediate Past President of the board of The Arc of the United States. She began her national board career in 2004. Elise has served as a Co-chair of the Policy and Positions Committee that is responsible for developing The Arc’s Public Policy Agenda and Position Statements. She is a Past President of The Arc of Davidson County and The Arc of Tennessee and remains actively involved with both chapters. Elise believes in the mission of The Arc and in including self-advocates in leadership roles in the organization. In addition to her work for The Arc, Elise is Co-Director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities; Director of Community Outreach, Vanderbilt Kennedy Center; and Senior Associate in the Department of Psychiatry. Elise has an adult son with an intellectual disability.


Directors (Chapter Elected)

Laura Kennedy Laura Kennedy has been active in NYSARC at both the statewide and local levels for more than three decades. She is Immediate Past President of NYSARC and the former president of the New York City Chapter of NYSARC, Inc. Deserving winner of numerous awards – including the 2000 Staten Island Woman of Achievement Award – and long active in her community, Kennedy serves as Executive Board Member for the Staten Island Developmental Disabilities Council, Chairperson for the Council’s Advocacy and Education Committees, Board Member for Friends of the College of Staten Island, and Board Member for Staten Island Mental Health Society, Inc. Kennedy also serves as Alter Guild Member for Christ Church New Brighton. Kennedy has residences both on Staten Island and in Essex, NY, in the Adirondacks.

Chloe Rothschild Chloe Rothschild is a young adult with autism. She is on a mission to make a difference and help teach others about autism by sharing her own experiences. Chloe advoates through writing, speaking, and social media. She currently serves on various boards in the Ohio area and has been involved with autism advocacy for over five years. Chloe has had the opportunity to be a speaker the Ohio Center for Autism and Low Incidence Conference, the Autism Research Institute Annual Conference, Milestones Autism Resource Conference, and the Autism Society of America National Conference. Chloe has shared her expereinces with parents, schoold districts, health providers, and the larger public.

Mitch Routon Mitch Routon, a member of The Arc Pikes Peak Region’s Board and The Arc of Colorado’s Board of Directors, is a strong self advocate in the Colorado Springs and larger Colorado community. His friendly, laid-back demeanor is paralleled by a quickness to speak out on injustices against those with disabilities. As a current board member for The Arc PPR, Mitch enjoys being involved in the non-profit in a variety of capacities. “I knew about The Arc PPR from growing up; my dad was a former board member and board president from 1994-2000,” Mitch said. “I like being involved with The Arc PPR, because it’s important to let people know that The Arc (advocacy) makes a difference. I want to do whatever I can to make sure that people who have disabilities have the resources they need.”

Hussain Ismail Hussain Ismail is a Pakistani-American marketing executive that has spent his career helping brands and non-profits tell their stories. Currently he is the Vice President of Marketing for VaynerMedia located in Brooklyn, New York. He began his career in the music industry, working at Interscope Records and Live Nation, working on artist releases and tours. Hussain was born in Pakistan but moved to the United States at a young age where he grew up in the bay area and has a sibling with an intellectual disability. Hussain was raised Muslim and has completed a pilgrimage to Mecca, but he currently identifies as atheist. While in most practical ways he identifies as Californian, his name, his ethnicity, and his family inextricably tie him to groups beyond that: Muslims in America, immigrants of all stripes, and Pakistanis everywhere.


Kathleen Stauffer Kathleen Stauffer has been a member of the board of The Arc of the United States since 2014 and serves on the Policy & Positions Committee. She is the Chief Executive Officer of The Arc of New London County in Norwich, CT. She is a recognized leader in public policy advocacy and in individual advocacy for self-advocates. Her leadership skills have contributed to a strong track record for building dynamic teams, supporting people, and working with diverse communities and cultures. In the area of employment for people with I/DD, she advocates “real work for real pay.” In the housing arena, Kathleen’s chapter serves about 61 people with I/DD in community living homes. Kathleen serves as a member of the Steering Committee for the National Conference of Executives of The Arc. Prior to her involvement in IDD services, Kathleen spent 30 years in media working initially

as an editor and journalist and later a group publisher.

Directors (Board Elected)

Dena L. Gassner Dena Gassner has been a member of the board of The Arc of the United States since 2014, and serves on the Policy & Positions Committee. She is a Social Worker in Huntington, West Virginia, who has also engaged in public policy advocacy on the local, regional, state, and national levels on topics such as denial of services due to a lack of service providers who can provide systems navigation support. She has also presented to the Interagency Autism Coordinating Committee and to the U.S. House of Representatives and spent considerable time at “Day on the Hill” events in Washington, D.C. She has also served as an advisory board member to the Tennessee Autism Summit. Dena has assisted many clients in navigating transition and vocational rehabilitation, and has given testimony before VR National Offices. Dena self-identifies as having been diagnosed with Asperger’s syndrome as an adult; she has a 24-year-old son who is on the Autism spectrum as well.

Mary Gonzales Mary Gonzalez has been a member of the board of The Arc of the United States since 2014, and serves on the Diversity Committee. She is experienced in public policy and an expert in leadership development. Over the years, she has trained many advocates and community organizers through an organization that she co-founded, The Gamaliel Foundation, which is known for its work in training community organizers and advancing social justice causes. She is a former member of the Illinois Governor’s Council on Developmental Disabilities. Mary has been involved with many local chapters of The Arc in California, and has been a speaker at the National Conference of Executives Summer Leadership Institute and at NCE’s pre-conference training during the National Convention. Mary is recently retired. She had a brother with a developmental disability.


Directors Continuing Though 2020

Dr. Kruti Acharya Dr. Acharya is a board certified developmental and behavioral pediatrician and internist in the Department of Disability and Human Development. She is the director of the Illinois Leadership Education in Neurodevelopmental and other related Disabilities (LEND) Program, an interdisciplinary graduate-level training program about leadership in disability, funded through the Maternal Child Health Bureau. Dr. Acharya cares for individuals with developmental disabilities using a lifespan perspective from childhood to adulthood. She is particularly interested in supporting adolescents and young adults with developmental disabilities as they transition to adult-systems of care. Her research has focused on the intersection of disability, ethics and genetic testing and how best to support families who are managing these issues. Dr. Acharya received her MD degree from Boston University. She completed a combined Internal Medicine-Pediatrics residency, followed by a fellowship in Developmental and Behavioral Pediatrics at the University of Chicago. She has completed training in medical ethics and served as faculty at the MacLean Center for Clinical Medical Ethics at the University of Chicago.

Grace L. Francis Grace Francis has been a national board member since 2015. Several members of Grace’s blended family experience disability. Positive social change is at the core of her personal and professional endeavors, and, as a result, her work and research focuses on family and disability policy, quality of life, family support, and positive post-high school outcomes for individuals with disabilities. She currently is an assistant professor of Special Education Adapted Curriculum at George Mason University. She formally was the director of the SUCCEED program, a residential college program for students with intellectual and developmental disabilities, at the University of Missouri-St. Louis. In this role she partnered with the St. Louis Arc to enhance the program, meet the needs of students and their families, enrich the preparation of University of Missouri-St. Louis faculty and staff to teach and meaningfully include students with disabilities, and participate in community outreach to promote access to college after high school for students with disabilities.


Connie Garner Connie Garner focuses her practice as Vice President for Disability Policy & Education Policy at the DC office of ML Strategies; she is also Executive Director for Advance CLASS, Inc. Her areas of experience include health care, mental health and substance use disorders, disability, long term care, and education. Prior to rejoining Foley Hoag in 2012, she was the Executive Vice President for Policy at United Cerebral Palsy (UCP). For 17 years, Connie served as Policy Director for Disability and Special Populations to the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP). She worked with the late Chairman Sen. Edward M. Kennedy, Sen. Christopher Dodd and Sen. Tom Harkin. She was the lead Democratic committee architect for the CLASS Act, the major long-term care legislation that is part of the Affordable Care Act; enactment of the landmark Mental Health Parity Act 2008; the 2006 and 2009 reauthorizations of the $2 billion Ryan White CARE Act; the Family Opportunity Act of 2006; the 2005 reauthorization of Individuals

with Disabilities Education Act (IDEA); and the 1999 Ticket to Work and Work Incentives Improvement Act. Connie also served in the U.S. Department of Education as Director of the Federal Interagency Coordinating Council for Children with Disabilities and as the secretary of education’s principal liaison on interagency healthcare matters. In addition to her work at the federal level, she has practiced as both a hospital and public health clinical nurse specialist, including as the nursing administrator for maternal-child health inpatient hospital units in the Philadelphia and Washington, D.C. areas. Connie earned bachelor’s and masters of science degrees in nursing from the University of Pennsylvania and George Mason University, respectively. She also earned an educational specialist degree in policy from George Washington University.

Dr. Neil Hawkins Dr. Neil C. Hawkins serves as the Chief Sustainability Officer and Corporate Vice President for Environment, Health & Safety (EH&S) for The Dow Chemical Company, where he is in his 29th year of service. Hawkins is a global leader in sustainable business practices, EH&S management, and public policy platforms for global sustainable development. He led Dow’s 2025 Sustainability Goals development, which aim to help chart a new course for business in global sustainable development. He holds doctoral and master’s degrees from the Harvard University School of Public Health, as well as an undergraduate degree from Georgia Tech. He and his family are very active in advocacy for individuals with disabilities and are strong supporters of community and professional theatre, including The Purple Rose Theatre in Chelsea, Michigan. Hawkins has two daughters and resides in Midland, Michigan.


Dr. Christopher Metzler Dr. Metzler appears regularly on The O’Reilly Factor and Fox News Strategy Room and CNBC where he provides expert commentary on U.S. and global affairs, politics, human rights, human capital, diversity and related issues. He travels extensively speaking to colleges, organizations and businesses in the United States and globally. He has also appeared on BBC News, Sky News, C-Span and The Fox Nightly Scoreboard. His radio appearances have included Brain and the Judge, The Monica Crowley Show, The Joe Madison Show, The Tavis Smiley Show and The Bev Smith Show. In addition to a Masters degree in Human Rights from Columbia University, he also holds a PhD from University of Aberdeen in Law as well as diplomas and postgraduate certificates in law. He is a member of The University of Oxford in Oxford, England as well as a member of Kellogg College at the University of Oxford. At Oxford, he read international human rights law leading to a law degree (MsT) in international human rights law from Oxford. A seasoned academic and legal scholar. Public figure with numerous TV and other media appearance. Global Inclusion Expert and nerd.

John Muller John Muller is currently pursuing his PhD in Philosophy in Wisconsin. He is a former associate attorney at the law firm Munger, Tolles & Olson LLP. Since 2014 he has served on the Policy and Positions Committee of The Arc. Before joining MTO, Mr. Muller was a fellow and lecturer at Harvard Law School. Previously, Mr. Muller clerked for Judge Guido Calabresi of the U.S. Court of Appeals for the Second Circuit and Judge Sandra L. Lynch of the U.S. Court of Appeals for the First Circuit. Mr. Muller received his J.D. from Yale Law School, where he was an articles editor of the Yale Law Journal. He received his A.B., summa cum laude, from Dartmouth College. He has a sister with Down syndrome.

Kenneth Oakes Kenneth Oakes has been involved in The Arc movement since he became a volunteer leader in The Youth Arc movement while in college. His career in special education spans over 40 years, and includes many different leadership roles in the disability and special education communities. He currently serves as Board President of The Arc of Pennsylvania. He is past president of The Arc of Philadelphia. He is currently an Adjunct Faculty member in the Education Department, School of Graduate Studies at Chestnut Hill College in Philadelphia. He is also a Special Education Consultant for Foundations, Inc.. Before that, Mr. Oakes was a Special Education Director at the School District of Philadelphia, a Consultant with PaTTAN, and a special educator.


Kelly Piacenti Kelly Piacenti has been a national board member since 2010. She has also served on the Diversity Committee, Resource Development Committee, and the Chapter Excellence Committee of the national organization. On the local level, she is also an active advocate who is a member of The Arc of Morris, New Jersey. She has been the director of the Metlife Center for Special Needs Planning in Somerset New Jersey. Kelly is a spokesperson for persons with intellectual and developmental disabilities who cannot speak for themselves. She has mentored self-advocates on the national board. She is the mother of a young son with developmental disabilities.

Valencia Faye Tate Faye Tate is the Vice President of Diversity & Inclusion at CoBank and the former Director for Global Equality Diversity and Inclusion at CH2M. CoBank is a national cooperative bank serving vital industries across rural America. The bank provides loans, leases, export financing and other financial services to agribusinesses and rural power, water and communications providers in all 50 states. She spent six years at Kaiser Hill Company at the Rocky Flats Environmental Technology site. For over fifteen years, Fay has worked in various areas related to Diversity and Inclusion. She is focused on positioning diversity and inclusion as strategic business imperatives. Prior to Working for Kaiser Hill, Faye was employed at Denver Water where she managed water sales and real estate and worked as the Equal Employment Opportunity Officer and Small Business Liaison. She serves on the National Board of Directors for The Human Rights Campaign and the Board of Directors for the Metro Denver Chamber Leadership Foundation, Denver District Our Child Care Center and the Rocky Mountain Minority Suppliers Development Council. She has served on the Board of Directors for the Denver Athletic Club, Colorado Bright Beginnings, The Rocky Mountain Children’s Choir and Colorado March of Dimes. She has a Juris Doctor Degree from the Antioch School of Law in Washington, D.C. and a Bachelor of Arts Degree in English Literature from James Madison University in Harrisonburg, Virginia. She is the mother of a daughter with cerebral palsy, who is blind, and has an intellectual disability.

Jose Velasco Jose Velasco is Vice-President of Operations and Strategy and co-leads the Autism at Work program globally at SAP. Jose has a 30-year IT/Software career that spans public and private sectors in companies ranging from startups to Fortune 50 enterprises. During his tenure of more than 20 years at SAP, he has occupied positions in product management, consulting, development, strategy, go-to-market and HR/diversity functions. He holds a Master Degree in Technology Commercialization from the University of Texas at Austin and B.S. in Computer Science from Tecnologico de Monterrey in Monterrey, Mexico. He is a parent of two children with Autism.


NCE Designated Directors

Carrie Hobbs-Guiden (Immediate Past NCE Steering Committee Chairwoman) Carrie Hobbs Guiden is Executive Director of The Arc Tennessee. She has over twenty-six years’ experience working with people with I/DD and their families primarily through local and state chapters of The Arc in Tennessee, Arizona and Indiana. Carrie began her career as a DSP and has experience in secondary transition, employment, positive behavior supports, process improvement, program operation, and public policy and systems advocacy.



November 9, 2018

Position Statements for Action

Section 6


To: The Arc’s Chapter Representatives From: Elise Mc Millan, President

Date: September 12, 2018

Re: Board Recommendations Regarding Position Statements

Over the past year, The Arc Board revised two position statements that had been reviewed and determined in need of revision. The Policy and Positions Committee is chaired by Board Member Fred Misilo from Massachusetts. The Committee worked through work groups and as a full committee on the two position statements. The Committee worked diligently to review the existing position statements; prepared revised drafts; requested input from various advisory bodies within The Arc; distributed proposed revisions to chapters for input, comments, and suggestions; reviewed and considered the comments; and made final recommendations to the Board of Directors for revisions to the two position statements: Education and Self-Determination.

During The Arc Board of Directors’ meeting on April 22, 2018, the Board reviewed the proposed changes to the position statements to be presented to chapter representatives for action during the Annual Business Meeting. The Board, after careful and thorough review of the proposed changes by the Committee, supports passage of the proposed revisions to the position statements on:

• Education • Self-Determination

During The Arc’s 2018 National Convention on Friday, November 9th from 8:00 a.m. to 9:00 a.m., there will be a listening session, Position Statement Listening Session, which will provide an opportunity for discussion of the position statements to be voted on at the business meeting (starting at 1:30 p.m.). The session will also provide an opportunity for initial recommendations to the Committee on issues to consider in the next round (2019-20) of position statement review.

Please join me in commending the outstanding work of the Policy and Positions Committee and The Arc staff.

In the event you have any questions about The Arc’s position statement process, or the content of these statements, feel free to contact me at [email protected]. Or you may contact Policy and Positions Committee Chair, Fred Misilo at [email protected], or staff, Marty Ford at [email protected].

mailto:[email protected]



Education

All children and youth with intellectual and/or developmental disabilities (I/DD)1 must receive a free appropriate public education that includes fair evaluation, ambitious goals, challenging objectives, the right to progress, individualized supports and services, high quality instruction, and access to the general education curriculum in age-appropriate inclusive settings. These are essential for achieving the nation’s four policy goals of equality of opportunity, full participation, independent living, and economic self-sufficiency (the four policy goals). Parents and families must be supported as essential partners in the education and transition to adult life of their sons and daughters.

Issue

People with I/DD continue to face numerous barriers in their education. Lifelong education is essential for all individuals with I/DD to achieve the four policy goals of the Individuals with Disabilities Education Act (IDEA) and to pursue opportunities for rich lives and contribute to the public good. “Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.” (IDEA, Individuals with Disabilities Education Act).

1 “People with intellectual disability (ID)" refers to those with "significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18", as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). "People with developmental disabilities (DD)" refers to those with "a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated," as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.


Many students with I/DD remain segregated in self-contained classrooms or separate schools, with few or no opportunities for academic achievement or social engagement in inclusive settings. Students with I/DD frequently do not have appropriately ambitious2 and personalized goals, challenging objectives, high quality instruction, individualized transition planning, and related services and supports necessary to engage as full members of their school learning communities. Consequently, many students with I/DD leave school unprepared for further education, employment, and independent living in the community.

Many schools have policies and practices that push youth with I/DD out of school and into the juvenile justice system (known as the “school to prison pipeline”). Further, many of those in detention facilities with qualifying disabilities are not provided special education and related services.

Many parents, families, and students themselves are excluded from systemic participation as essential partners in the evaluation of the student’s strengths and limitations, as well as the development and implementation of their Individualized Education Programs (IEPs).

Administrators, educators, and support staff too often lack sufficient training and knowledge about the legal rights, learning needs, and abilities of these students. School districts struggle to identify, recruit, and retain qualified special education personnel. Paraprofessionals providing support in inclusive classrooms are often poorly paid and do not always receive or seek professional development relevant to students’ learning needs.

Outdated, inaccurate beliefs about students with I/DD persist, leading to low expectations, segregated classrooms, inappropriate disciplinary practices, and diminished accountability for these students. In some communities, an unexamined sole focus on student performance has led to an erroneous conclusion that students with I/DD are “bringing down” test scores and are to blame when schools and school systems do not achieve adequate progress.

Position To ensure students with I/DD receive the education to which they are legally entitled, all those involved in the education of these students must work to fully implement our nation’s civil rights and education laws and accomplish the following actions.

All Means All: Zero Reject • Assure timely evaluation, identification, and provision of education and related

services to all students with I/DD, incorporating all aspects of the students’ diversity, including age, gender, ethnicity, culture, language, socio-economic circumstances, sexual orientation, and family environment.

• Disciplinary actions (suspension, expulsion, segregation) and alternate placements should not exclude the student from access to appropriate education and related services.

Non-Discriminatory and Comprehensive Eligibility Evaluations and Appropriate Assessments 2 In March 2017, the U.S. Supreme Court issued a unanimous decision in Endrew F. v. Douglas County School District RE-1 clarifying the test for determining whether school districts have met their obligation to provide a free appropriate public education (FAPE) to students with disabilities guaranteed by the Individuals with Disabilities Education Act. The Court ruled that a child’s educational program must be “appropriately ambitious in light of his circumstances,” a more demanding standard than the “merely more than de minimis” test applied by the Tenth Circuit.


• Assure that the needs of the individual are considered fairly and comprehensively,including cognitive, emotional, functional, and developmental needs, as well as allareas of suspected disability and mental health needs.

• Assure that multiple assessments, including those that identify a student’s strengthsand abilities, are used and that IQ is not the sole measure of human functioning, nordoes IQ alone determine placement or access to the general curriculum.

• Exercise clinical judgment that is built upon respect for the person and emerges fromspecialized training and experience in I/DD, specific knowledge of the person andhis/her environments, extensive data, and use of critical thinking skills.

• Assure that any predictions about a student’s potential learning are evidence-basedand founded in high expectations for further education, employment, and independentliving.

• Assure that all educators implement appropriately ambitious goals and challengingobjectives and use measurements of progress that are aligned to the unique ways thatstudents with I/DD learn. Develop adaptations for assessment and grading, whennecessary, that accurately capture the strengths and limitations of students with I/DD.

High Expectations and Free Appropriate Public Education (FAPE)

• Develop and implement IEPs with high expectations that include appropriatelyambitious personalized goals and challenging objectives and that build on a student’sstrengths; meet the student’s learning, employment, and independent living needs;and offer related services and supplementary services necessary and likely, based onevidence, to ensure the student will make progress toward achieving the nation’s fourpolicy goals.

• Ensure that all students have access to the general education curriculum. Generaleducation includes the academic curriculum, extracurricular activities, and otherschool activities.

• Incorporate evidence-based, peer-reviewed instructional strategies and interventions,provided by professionally qualified teachers, related services personnel, and otherstaff, all of whom receive the training, preparation, and supports they need to beeffective professionals.

• Ensure that a range of appropriate technology options are made available in a timelyand culturally and linguistically appropriate manner to all students who could benefitfrom them, and that the necessary training for use of the technology is providedimmediately and consistently.

Autonomy, Self-Determination, and Decision-Making Supports

• Incorporate and support the development of autonomy, self-determination, self-advocacy, and leadership skills throughout students’ educational experiences,including meaningful participation in the student’s IEP.

• Assure that school policy and semi-annual in-service training emphasizes autonomy,self-determination, and decision-making supports, and that teachers and other non-lawyers do not give families legal advice related to guardianship.

Inclusion and the Least Restrictive Environment (LRE)

• To the maximum extent appropriate, every student has a right to be educated in theirinclusive neighborhood school and in the general education curriculum in that school.Any exception should be rare and considered only when education in the generaleducation classroom cannot be satisfactorily achieved. Each student has a right to the


related services, supplementary aids and services, accommodations, and modifications needed to learn alongside students without disabilities.

• Assure that the student is integrated in academic and social aspects of the generalcurriculum.

• Include an explicit written plan to achieve more integration in both academic andsocial aspects of the general curriculum when the student is currently in a restrictedsetting.

• Foster the development of peer relationships and membership in the schoolcommunity to create a receptive, welcoming atmosphere, including extracurricularactivities and school trips.

• Avoid the long-term costs of segregating students with I/DD, including the reducedopportunities for learning, employment, independent living, and social engagement.

• Ensure that all teachers and related services personnel are trained, prepared, andsupported to teach and support students effectively in the general educationcurriculum and in inclusive settings.

Safe and Supportive Education Environments• Ensure safe school environments that provide mental health supports and protection

against bullying.• Ensure that all students with I/DD have effective culturally and linguistically

appropriate communication systems and technology that reduces the need to usebehavior to communicate and maximize educational engagement.

• Assure development and ongoing use of school-wide and system-wide interventionmodels, including school-wide positive behavioral supports and using the principles ofuniversal design for learning (UDL) in designing curricula, materials, instruction, andassessments to create maximum access to learning environments for students withdiverse abilities and learning styles.

• Avoid harsh policies and procedures, such as “zero tolerance”, that lead to exclusion,injury, loss of education, or involvement with the criminal justice system byimplementing school-wide positive behavior support that includes students withdisabilities to prevent or eliminate such situations. Assure appropriate evaluations andIEPS, and avoid the criminalization of behaviors that are the manifestation of thestudent’s disabilities.

• Prohibit the use of mechanical or chemical restraint, isolation, or aversives.Emergency, time-limited, monitored restraint may be used only by trained personneland only when the student's behavior presents an imminent danger of serious physicalharm to the student or others and less restrictive interventions are insufficient tomitigate the imminent danger of serious physical harm. Physical restraint whichrestricts airflow, including prone restraint, and mechanical restraint must beprohibited.

• Ensure that supports and strategies are planned and implemented to successfullyreintegrate a student who has been restrained or secluded back into the school orclassroom environment.

• Assure that students are not disciplined for the manifestation of their disabilities.• Assure safe school transportation for all students with disabilities, provided by trained

and monitored drivers with background checks, in order to avoid abuse andmaltreatment of students. Schools must assure the sufficient allocation oftransportation resources such that transportation is not used to justify earlydepartures, late arrivals, or excessive travel times.

School Choice


• Charter schools and private schools that accept public funds through a voucher or voucher-like system must comply with IDEA, the Americans with Disabilities Act (ADA), and Section 504 of the Rehabilitation Act (Section 504). Specifically, they must provide zero reject and free appropriate public education in the least restrictive environment, including nondiscriminatory evaluation, individualized appropriate education plan, access to the general curriculum (academic, extracurricular, and other school activities), procedural safeguards, and parent participation.

• Ensure that school choice efforts do not diminish the resources and effectiveness of public school systems in which they operate.

Family and Student Participation • Ensure the meaningful participation of students, families, and their chosen advisors in

the evaluation of students and the design and monitoring of the students’ IEPs. • Assure that parents with special needs, including those with disabilities or language or

cultural differences, receive the information, supports, services, and full ADA/504 rights to effectively exercise their rights to partner in the education of their children.

• Expeditiously connect students and families with information, resources, and training that help them understand and exercise their rights under the IDEA, Section 504, the ADA, Family Educational Rights and Privacy Act (FERPA), and the Every Student Succeeds Act (ESSA).

• Assure that school personnel provide timely explanations that are understandable and use functional descriptive language for special education and related services being proposed for the student.

Lifelong Education, Transition, and Post-Secondary Education • Provide early intervention and preschool services to infants, toddlers, and preschool-

age children with disabilities alongside their typical peers and provide transition planning for children to ensure access to the general education curriculum and full integration in neighborhood schools as they move to kindergarten or first grade.

• Develop and implement transition plans based on student strengths, preferences, and interests to facilitate each student’s successful movement from school to adult life, including postsecondary and vocational education, competitive integrated employment, independent living, and community participation.

• Develop an individualized postsecondary and/or pre-employment program, including choices and creative career exploration through apprenticeships and internships, in coordination with IDEA and the Workforce Innovation and Opportunity Act (WIOA).

• Ensure that all students receive meaningful evidence of their school achievements including diplomas.

System Capacity Development, Funding, Oversight, and Accountability

• Assure that the training, preparation, compensation, supports, and accountability systems needed to build a cadre of effective professional teachers, other education personnel such as school principals, related services personnel, paraprofessionals, and other staff are evidence-based and effective to meet the child’s specific needs.

• Assure a cadre of effective lay and legal advocates to assist families and individuals to exercise their rights.

• Increase active monitoring and enforcement through local, state, and federal agencies to ensure that the IDEA, ADA, Section 504, and state special education laws and mandates are met.

• Fulfill the federal commitment to fully fund the IDEA.


• Ensure that all students with disabilities, including those with the most significantcognitive disabilities, continue to be included in public school, district, and state levelaccountability systems. Ensure that states are not allowed to exempt more than 1% ofstudents (that is, exempt only those students that the state determines have the mostsignificant cognitive disabilities up to 1%) from their general accountability data.

Adopted:

AAIDD Board of Directors February 14, 2018

The Arc Board of Directors April 22, 2018


Self-Determination

People with intellectual and/or developmental disabilities1 (I/DD) have the same right to, and responsibilities that accompany, self-determination as everyone else. They are entitled to opportunities, respectful support, and the authority to exert control in their lives, to direct their services, and to act on their own behalf.

Issue

Historically, many individuals with I/DD have been denied their right to self-determination. They have not had the opportunity or the supports to make choices and decisions about important aspects of their lives. Instead, they have often been overprotected and involuntarily segregated, with others making decisions about key elements of their lives. For many, the absence of the dignity of risk and opportunities to make choices has impeded people with I/DD from exercising their right of self-determination and has inhibited their ability to become contributing, valued, and respected members of their communities, living lives of their own choosing.

Position

People with I/DD have the same right to self-determination as all people and are entitled to the freedom, authority, and supports to exercise control over their lives. People with I/DD must understand that they can direct and influence circumstances that are important to them. This right to self-determination exists regardless of guardianship status.

1 “People with intellectual disability (ID)" refers to those with "significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18", as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). "People with developmental disabilities (DD)" refers to those with "a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated," as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.


Family members, friends, and other allies play a critical role in promoting self-determination by providing supports and working collaboratively to achieve the individual’s goals. Families, friends, and other allies should understand, recognize, and promote the rights and responsibilities of self-determination and respect the limitations on their own authority. Service providers, educators, and substitute decision-makers must recognize and respect the individual’s right to self-determination and the limitations on their authority.

To this end, people with I/DD must be able:

In their personal lives to:

• lead in decision-making and problem-solving about all aspects of their lives and have the supports they want to make decisions;

• advocate for themselves with the assurance that their desires, interests, and preferences will be respected and honored;

• choose their own supporters, friends, and allies;

• direct their own supports and services and allocate available resources;

• hire, train, manage, and fire their own staff;

• acquire additional skills to assist in determining the course of their lives;

• use adaptive communications devices and other assistive technology; and

• take risks to achieve the lives they desire.

In their community lives to:

• participate fully and meaningfully in the community;

• receive the necessary supports and assistance to vote and exercise other rights as citizens.

• become valued members and leaders of the community;

• serve as active members and leaders of community boards, advisory councils, and

other organizations; • take leadership roles in setting the policy direction for the self-determination

movement; and • have representation and meaningful involvement in policy-making at the federal,

state, and local levels.


Recognition of the right to self-determination must be a priority. The principles of self-determination and opportunities to promote self-determination must be incorporated into conferences, publications, advocacy, training, services, policies, and research in the I/DD community. Laws, regulations, policies, procedures, and funding systems should be regularly reviewed and revised to remove barriers and to promote self-determination. People with I/DD must be involved in this process at all levels. Adopted:

AAIDD Board of Directors February 14, 2018 The Arc Board of Directors April 22, 2018


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