INTELLECTUAL AND DEVELOPMENTAL DISABILITIES ÓAAIDD 2015, Vol. 53, No. 4, 257–270 DOI: 10.1352/1934-9556-53.4.257 Mental/Behavioral Health Services: Medicaid Home and Community-Based Services 1915(c) Waiver Allocation for People With Intellectual and Developmental Disabilities Carli Friedman, Amie Lulinski, and Mary C. Rizzolo Abstract Research has indicated that people who have intellectual and developmental disabilities (IDD) appear to be more vulnerable to having a co-existing psychiatric diagnosis. This study examined Medicaid 1915(c) Home and Community-Based Services (HCBS) waiver applications for people with IDD to determine the mental/behavioral health services proposed. We found that a large variance exists across states in projected spending for services, spending per participant, annual hours of service per participant, and hourly reimbursement rates. Moreover, compared to overall funding we found a general lack of state commitment to mental/behavioral services. States must shore up the capacity of their HCBS 1915(c) waivers to support people with behavioral challenges in addition to IDD in order to assure that services continue to be delivered in the least restrictive environment appropriate. Key Words: Mental/behavioral health; dual diagnosis; intellectual and developmental disabilities; Home and Community-Based Services waivers The Substance Abuse and Mental Health Services Administration (2013) reported that in 2012, an estimated 43.7 million adults (ages 18 or older) in the United States had experienced any mental illness in the previous year; this represented 18.6% of all adults in the United States. The definition of any mental illness used for the study was: currently or at any time in the past 12 months having had a diagnosable mental, behavioral, or emotional disorder (excluding developmen- tal and substance use disorders) of sufficient duration to meet diagnostic criteria specified within the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). (Substance Abuse and Mental Health Services Administration, 2013, p. 9) The coexistence of intellectual disability (ID) along with a psychiatric disorder is referred to as dual diagnosis (National Association for the Dually Diagnosed, 2014). Estimates of the prevalence of psychiatric disability in individuals who also have intellectual and developmental disabilities (IDD) vary widely. In a literature review, Borthwick-Duffy (1994) reported prevalence from 10% to over 80%, whereas more recently, a systematic review by Einfeld, Ellis, and Emerson (2011) found dual diagnosis rates between 30%-50% in children and adolescents with ID. Allott, Francey, and Velligan (2013) reported that people who have IDD are three to five times more likely to have a psychiatric disability than the general population. Similarly, according to outcome measures data from the National Core Indicators, 34% of adults surveyed who have IDD and are receiving services have a co- occurring psychiatric diagnosis (National Associa- tion of State Directors of Developmental Disabilities Services & Human Services Research Institute, 2012). (National Core Indicators is a program by the National Association of State Directors of Developmental Disability Services [NASDDDS] and the Human Services Research Institute [HSRI] that helps developmental disability agencies and systems measure their performance [National Core Indicators, 2015]. This measurement allows perfor- mance standards to be compared over time, across organizations, and across states [National Core Indicators, 2015]. The goal is to use this data to strengthen policy, inform quality assurance, and C. Friedman, A. Lulinski, and M. C. Rizzolo 257
Transcript
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
Mental/Behavioral Health Services: Medicaid Home andCommunity-Based Services 1915(c) Waiver Allocation for People
With Intellectual and Developmental Disabilities
Carli Friedman, Amie Lulinski, and Mary C. Rizzolo
AbstractResearch has indicated that people who have intellectual and developmental disabilities (IDD)appear to be more vulnerable to having a co-existing psychiatric diagnosis. This study examinedMedicaid 1915(c) Home and Community-Based Services (HCBS) waiver applications for peoplewith IDD to determine the mental/behavioral health services proposed. We found that a largevariance exists across states in projected spending for services, spending per participant, annualhours of service per participant, and hourly reimbursement rates. Moreover, compared to overallfunding we found a general lack of state commitment to mental/behavioral services. States mustshore up the capacity of their HCBS 1915(c) waivers to support people with behavioral challengesin addition to IDD in order to assure that services continue to be delivered in the least restrictiveenvironment appropriate.
Administration (2013) reported that in 2012, anestimated 43.7 million adults (ages 18 or older) in
the United States had experienced any mental illness
in the previous year; this represented 18.6% of all
adults in the United States. The definition of any
mental illness used for the study was:
currently or at any time in the past 12 months
having had a diagnosable mental, behavioral,
or emotional disorder (excluding developmen-
tal and substance use disorders) of sufficient
duration to meet diagnostic criteria specified
within the Diagnostic and Statistical Manual of
Mental Disorders (DSM-IV). (Substance Abuse
and Mental Health Services Administration,2013, p. 9)
The coexistence of intellectual disability (ID)along with a psychiatric disorder is referred to as dual
diagnosis (National Association for the Dually
Diagnosed, 2014). Estimates of the prevalence of
psychiatric disability in individuals who also have
intellectual and developmental disabilities (IDD)
vary widely. In a literature review, Borthwick-Duffy
(1994) reported prevalence from 10% to over 80%,whereas more recently, a systematic review byEinfeld, Ellis, and Emerson (2011) found dualdiagnosis rates between 30%-50% in children andadolescents with ID. Allott, Francey, and Velligan(2013) reported that people who have IDD are threeto five times more likely to have a psychiatricdisability than the general population. Similarly,according to outcome measures data from theNational Core Indicators, 34% of adults surveyedwho have IDD and are receiving services have a co-occurring psychiatric diagnosis (National Associa-tion of State Directors of Developmental DisabilitiesServices & Human Services Research Institute,2012). (National Core Indicators is a program bythe National Association of State Directors ofDevelopmental Disability Services [NASDDDS]and the Human Services Research Institute [HSRI]that helps developmental disability agencies andsystems measure their performance [National CoreIndicators, 2015]. This measurement allows perfor-mance standards to be compared over time, acrossorganizations, and across states [National CoreIndicators, 2015]. The goal is to use this data tostrengthen policy, inform quality assurance, and
C. Friedman, A. Lulinski, and M. C. Rizzolo 257
compare performance norms [National Core Indica-tors, 2015]). Estimates likely vary as a result ofdifferences in diagnostic tools; limited study samples;differences in settings across studies; and theoverlapping and similar presentations of IDD, autism,and psychiatric symptoms (Buckles, Luckasson, &Keefe, 2013; Deb, Thomas, & Bright, 2001).
Although the official rate of dual diagnosisremains unclear, all estimates portray persons whohave IDD as more vulnerable to having a diagnosisof psychiatric disability. This finding raises concerngiven that a dual diagnosis can make successfulcommunity living challenging. People with IDDwho have a dual diagnosis or who presentbehavioral ‘‘challenges’’ are more likely to beinstitutionalized and are often the last to bereleased (Charlot & Beasley, 2013; McIntyre,Blacher, & Baker, 2002). Additionally, they havethe least successful community transitions (Man-sell, 2006; Wing, 1989) due in large part tocommunity services and supports that are frequent-ly inadequate to meet the needs of those withbehavioral challenges. Because of these compound-ing challenges, it is important to examine currentservices and supports that are intended to helpmaintain people with a dual diagnosis in commu-nity settings to better understand the current statusof services and inform policy decisions.
Deinstitutionalization and Home and
Community-Based Services
Since reaching a peak in 1967 (U.S. Department ofHealth, Education, and Welfare, 1972), de-popu-lation of institutional settings has occurred at anannual average rate of 5% nationwide, resulting inthe closure or in the process of closure of 174 publicinstitutions in 43 states (Braddock et al., 2015). Inaddition to this trend toward census reduction, the1999 Olmstead decision issued by the U.S. SupremeCourt (Olmstead v. L.C., 1999), has also had asignificant impact related to institutionalization.The Olmstead decision requires that states providepeople with disabilities services in the mostintegrated setting possible rather than unnecessar-ily segregate them. Then Assistant AttorneyGeneral Perez stated that ‘‘the Olmstead decisionmakes it clear that states have an obligation toprovide services to individuals with disabilities inthe most integrated setting appropriate to theirneeds’’ (Perez, 2012, n.p.).
Over the past three decades, numerous studieshave established that moving from institutionalsettings into smaller community-based ones lead tobetter outcomes for people who have IDD (Kim,Larson, & Lakin, 1999; Larson & Lakin, 1989,2012). Maladaptive behaviors (e.g., harm to selfand/or others, property destruction) however, areoften a common reason for the failure of commu-nity-based residential settings after transition froman institutional setting (Causby & York, 1991;Intagliata & Willer, 1982; Lakin, Hill, Hauber, &Bruininks, 1983; Lulinski-Norris, Rizzolo, & Heller,2012; Schalock, Harper, & Genung, 1981; Windle,Stewart, & Brown, 1961). For example, a studyanalyzing data for individuals transitioning from astate-operated institution in Illinois revealed that91% of individuals who returned to institutions didso because of behavioral issues (Lulinski, 2014).This failure suggests an inadequate communitycapacity to provide necessary intervention forsituations in which an individual is experiencinga behavioral crisis.
Medicaid Home and Community-Based Ser-vices (HCBS) 1915(c) waivers are one of the largestproviders of long-term services and supports forpeople with IDD (Rizzolo, Friedman, Lulinski-Norris, & Braddock, 2013). Prior to the creationof the Medicaid HCBS waiver in 1981, manypeople with IDD who did not reside in the familyhome found themselves with few alternatives tosegregated institutional settings. HCBS provides anumber of community-based service options includ-ing residential and day habilitation, prevocationaland supported employment, family supports, trans-portation, dental, respite, assistive technology, andcrisis services (Rizzolo et al., 2013). The HCBSwaiver option allows service delivery in integratedcommunity-based settings (including in privateindividual and family homes) as opposed to servicedelivery in segregated institutional settings becausethe three main provisions of the Social Security Actcan be ‘‘waived’’ (U.S. Department of Health andHuman Services, 2000). The use of HCBS waivershas grown significantly as a result of the benefits ofcommunity living, the cost effectiveness of thesesettings, and the preferences of people with IDD(Hemp, Braddock, & King, 2014; Lakin, Larson, &Kim, 2011; Mansell & Beadle-Brown, 2004).
Fund allocation illustrates the shift in theprovision of services from institutionally based tocommunity-based with HCBS funding surpassingthat of institutional funding in the year 2000. In FY
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
2013, a total of $31.9 billion was spent on HCBSservices as compared to $13.0 billion on institu-tional settings (Braddock et al., 2015). Medicaid-funded programs provided 78%, or $47.77 billion,of all IDD spending on long-term supports andservices in the United States (Braddock et al.,2015). Additionally, the majority (66%) of FederalMedicaid spending in FY 2013 was allocated towardHCBS waiver services (Braddock et al., 2015).
Although Medicaid is the largest provider ofmental health services in the United States, itallows states flexibility in how they will covermental health services and as a result, servicesoffered by states vary widely (The Henry J. KaiserFamily Foundation, 2012c; Mann & Hyde, 2013).(The Henry J. Kaiser Family Foundation [2012a,2012b, 2012c, 2012d] serves as a good example ofthis variation. See The Henry J. Kaiser FamilyFoundation [2012a, 2012b, 2012c, 2012d] for tablesof Medicaid mental health services provided instate plans across the country.) A national analysisof trends in HCBS 1915(c) waiver applicationsservices for people with IDD by Rizzolo et al.(2013) revealed that in FY 2010, a proposed $24.6million was allocated for crisis services, represent-ing 0.01% of the total HCBS budget for that year.Given the continuing trend of institutional de-population in the United States in favor ofcommunity-based settings, a further analysis ofcategorical expenditures on mental health servicesis warranted.
The purpose of this article is to examine howmental/behavioral health services are allocated inMedicaid HCBS Section 1915(c) waivers forpeople with IDD. Such comparison across stateHCBS Waiver applications is necessary due to theamount of variation across state waiver programs.As Peebles and Bohl (2014) observed, ‘‘researchersshould use caution and consider looking intoindividual states’ waiver applications to learn moreabout what the state program covers, because eachwaiver is unique even when compared to waivers ofthe same type in different states’’ (p. E11). Fiscalyear (FY) 2013 HCBS IDD waivers providingmental/behavioral health services were collectedand compared to determine funding and expendi-ture projections as well as service utilization. Inaddition to examination of variation across states,analysis of services categories, hourly reimburse-ment rates, and annual hours of service perparticipant will be discussed. Finally, proposed FY2013 mental/behavioral health spending was com-
pared to FY 2012 expenditures to examine proposedchanges in allocation.
Method
A number of Medicaid options including 1115demonstrations, 1915(b) managed care, 1915(i)HCBS state plans, and 1915(k) Community FirstChoice, provide mental health services. Forexample, the Henry J. Kaiser Foundation has anumber of tables that detail ways states providemental health services in Medicaid state plans: (a)psychologist services, (b) public health and mentalhealth clinics, (c) mental health and substanceabuse rehabilitation services, and (d) inpatienthospital and nursing facility services in institutionsfor mental diseases ages 65 and older (The Henry J.Kaiser Foundation, 2012a, 2012b, 2012c, 2012d).However, this study analyzed Medicaid HCBS1915(c) waivers because they are the mostprevalent funding stream for people with IDD(Rizzolo et al., 2013). Methods for this study weresimilar to studies by Rizzolo et al. (2013) in which anational study of Medicaid HCBS 1915(c) waiversfor people with IDD was conducted, and Friedman,Rizzolo, and Schindler (2014), in which theauthors examined dental services in MedicaidHCBS 1915(c) waivers for people with IDD.
HCBS 1915(c) waiver applications were ob-tained by reviewing all waiver applications avail-able on the Centers for Medicare & MedicaidServices (CMS) Medicaid.gov web site (see Figure1 for detailed tree of process in addition to thefollowing description). No age limitations wereimposed, however HCBS waiver applicationsneeded to specify the inclusion of either ‘‘mentalretardation’’ (MR), developmental disability (DD),or autism (ASD)—people with IDD. (Althoughthe term is considered outdated, ‘‘mental retarda-tion’’ remains in use in statute as well as a targetgroup option in the waiver application templateand thus necessitated its use as a search term.) Thisdata was collected over a 12-month period (June2013 to June 2014). In addition to this technique,state developmental disability agency and divisionweb sites were reviewed. It should be noted thatalthough we were aware of at least nine additionalwaiver programs operating in FY 2012 and six in FY2013, we were not able to access detailedinformation about them.
Using these methods, FY 2013 data from 99HCBS waivers (43 states and the District of
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
service. CMS requires states to enter this informa-tion about their services to demonstrate costneutrality (Rizzolo et al., 2013). States also:
project future waiver years’ spending based onprior years’ data with certain adjustments.Furthermore, states cap the number of personswho may be enrolled in the waiver, and manywaivers cap the maximum cost per person sothat they do not exceed the cost-neutralitylimit. (Rizzolo et al., 2013, pp. 3-4)
The HCBS waiver application data used in thecurrent study are based on projections of spendingmade to the federal government. However, webelieve the data are a reasonably accurate proxy ofIDD waiver services because states base proposedspending on previous years’ actual utilization.Moreover, Rizzolo et al.’s (2013) analysis of IDDwaiver projections revealed percentages ‘‘congruentwith spending patterns identified by researchers atMathematica (Irvin, 2011, September) who used2008 Medicaid Statistical Information Systems(MSIS) claims data from 44 states and Washington,DC to determine trends in waiver expendituresacross the states’’ (Rizzolo et al., 2013, pp. 19-20).
Additionally, all service definitions were ana-lyzed to determine service patterns. The analysis ofdefinitions aided in the creation of a taxonomy ofservices similar to the one developed by ThompsonReuters and Mathematica (Eiken, 2011) and Rizzoloet al.’s (2013) FY 2010 taxonomy that wasspecifically tailored to IDD waivers.
Once services were sorted into taxonomycategories, we used the service definitions toidentify all services related to mental/behavioralhealth (e.g., behavior therapy, psychologist, crisisintervention professional). Although all taxonomycategories were examined for mental/behavioralservices, these services came only from the ‘‘healthand professional services’’ and ‘‘family training andcounseling (crisis)’’ taxonomy categories. Qualita-tive trends across the category definitions as well asany unique aspects are also described. Once datawere organized, data related to service expenditureswere then quantitatively analyzed to determineprojected spending, projected users targeted, andtrends across services and waivers. To compare FY2013 and FY 2012, the same process was completedwith FY 2012 data gathered from 93 HCBS waivers(43 states and Washington, DC).
It should be noted that any mental/behavioralhealth provision that was provided within a bulkservice, such as residential habilitation or in-homesupports, were not included in this analysis. Itwould not have been possible for us to examinethese services that provide some sort of support forchallenging behavior because the funding isaggregated and is not differentiated for certainparts of the service. Including these items wouldhave inaccurately inflated our results.
Findings
Service DefinitionsIn alignment with both the literature review andanalysis, our qualitative analysis of service defini-tions revealed two major trends in mental/behav-ioral health services provided by HCBS Waivers. Ingeneral, mental/behavioral health services tendedto relate to behavioral/therapeutic services or crisisservices. It should be noted that the line betweenthese two trends is far from clear-cut and some ofthe behavioral/therapeutic services also containedcrisis services.
Behavioral/therapeutic services. Behavioral/therapeutic services are provided to individualswith emotional, behavioral, or mental health issuesthat result in functional impairments and whichmay interfere with community living. Theseservices commonly included (a) a behavior supportplan (BSP), (b) a functional behavioral assessment(FBA) development, and/or (c) psychological andadaptive behavior screening and assessments.Another common aspect of behavioral/therapeuticservices was counseling and development oftherapeutic plans. This service included therapyas well as environmental manipulation, behavioralintervention, or behavior technique implementa-tion. It was also common for these services toinclude consultation with family members orsupport staff, and training about BSP implementa-tion to families, direct care workers, or staff.
Although they may differ slightly depending onthe service, behavioral and therapeutic servicesoften provide services with overlapping goals so arediscussed in tandem. Behavioral services typicallyemphasized the development of desirable adaptivebehavior over the elimination or suppression ofundesirable behavior; examples included AppliedBehavior Analysis (ABA), relationship develop-ment intervention (RDI), and Floor Time. Similarly,therapeutic services typically emphasized improving
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
individuals’ health, welfare, and functioning in thecommunity by developing adaptive skills, minimal-izing maladaptive behaviors, and/or increasingindividuals’ ability to perform activities of dailyliving. Examples of therapeutic service techniquesincluded individual counseling, biofeedback, cogni-tive behavioral therapy, family counseling, andsubstance abuse counseling and intervention.
Crisis services. A second trend was providingservices designed to aid immediately in crisissituations. The services aimed at a crisis oftennoted that the goal was prevention of theindividual being placed in a more restrictiveinstitutionalized setting. In addition to generalintervention, these services often included makingintervention treatment plans and assessing short-term targets by analyzing psychological, social,ecological, and other factors contributing to thecrisis. They also typically included support includ-ing self-care, counseling, therapeutic services, andintensive supervision during the crisis.
Most definitions indicated that crisis-relatedservices could be provided in any setting—partic-ularly the one in which the crisis was occurring.However, others, such as Massachusetts’ Commu-nity Living Waiver and Massachusetts’ AdultResidential Waiver, specified that the crisis serviceshould occur in a licensed respite facility or thehome of an individual family provider. Crisisservices also varied in length of time the provisionwas allowed. For example, Maine’s Home andCommunity-Based Services for Adults With ID orAutistic Spectrum Disorder specified that thesecrisis services must not exceed 2 weeks. NorthCarolina’s Comprehensive Waiver and NorthCarolina’s supports Waiver cannot exceed 14calendar days. Yet other waivers, like Massachu-setts’ Community Living Waiver and Massachu-setts’ Adult Residential Waiver directly specifiedthat there is no time limit imposed upon theservices because the goal is to stabilize theparticipant and then develop a new IndividualPlan of Care at the proper pace.
Service ExpendituresEighty out of 99 (80.8%) of the HCBS 1915(c)waivers we examined provided some type ofmental/behavioral health service in FY 2013 (seeTable 1). FY 2013 waivers providing mental healthservices projected $327.78 million of spending (outof $28.03 billion) for a total of 95,881 waiver
participants (out of 685,000 unduplicated partici-pants). This FY 2013 total of $327.78 million inspending for mental health services amounts toonly 1.17% of all projected HCBS waiver spendingallocated for mental/behavioral health services.These proportions varied widely. Fourteen of the80 (17.5%) waivers that provided mental/behav-ioral health services in FY 2013 projected spendingless than .25% of their total projected budget forthese services. Twelve (15%) waivers projectedspending between .25% and .49%; 13 (16.3%)between .5% and .99%; 29 (36.3%) between 1%and 9.99%; 7 (8.8%) between 10% and 19.99%;two (2.5%) between 30% and 49.99%; and one(1.3%) between 90% and 99.99%; Finally, two ofthe waivers (2.5%) were specifically designed formental health services; as such, 100% of thesewaivers were for mental/behavioral health supports.
Spending for individual mental health servicesranged widely from $18 for Indiana Family SupportsWaiver’s psychological therapy–family (serving oneparticipant) to $109.8 million for California HCBSWaiver for Californians With DevelopmentalDisabilities’ (CA0336.R03.00) behavioral inter-vention services (serving 16,428 participants), withthe majority (88%) of projected spending perservice below $3 million. These waivers projectedan average spending of $72.99 per hour for mental/behavioral health services, ranging from $8.60 anhour for Indiana Community Integration andHabilitation Waiver’s Psychological Therapy–Group to $1,400 an hour for South CarolinaPervasive Developmental Disorder waiver’s EarlyIntensive Behavioral Intervention Plan Implemen-tation. Hourly rates are detailed further in Figure 2.
As detailed in Figure 3, the average project-ed spending per participant receiving theseservices varied largely in FY 2013. The majorityof services (85.8%) projected spending less than$8,000 on average per participant receiving theseservices; 29.4% of services projected less than$1,000 on average spending per participantreceiving these services.
The number of hours of service the averageparticipant received in a year (FY 2013) also varied,with an average of 93.52 hr per participant per yearacross the services. Indiana Community Integrationand Habilitation Waiver and Indiana FamilySupports Waiver’s ‘‘psychology therapy family’’services both provided the smallest amount ofservice hours with an average 15 min of service perparticipant per year, whereas South Carolina
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
Pervasive Developmental Disorder Waiver’s ‘‘linetherapy,’’ ‘‘line therapy II,’’ ‘‘self-directed linetherapy,’’ and ‘‘self-directed line therapy II’’ servicesprovided the largest at 1,000 annual hours ofservice per average participant. (Line therapy inIndiana’s waivers is early intensive behavioralintervention treatment and behavioral support.)As can been seen in Figure 4, the majority ofservices (88.9%) provided less than 201 hr ofannual service per average participant. In fact,56.1% of services provided less than 30 hr of servicea year to the average participant.
Examining FY 2012 mental/behavioral healthservices we found that 96 of the 104 (92.3%)examined waivers offered 208 types of mental/behavioral health services in FY 2012 and/or FY2013. In FY 2012, $190.34 million (out of $20.97billion), or .91% of projected HCBS spending, wasallocated to mental health services. This amount iscompared to $327.78 million of spending for 65,219participants in FY 2013. Thus, projected mental/behavioral health spending increased 26.5%($137.44 million) and participants increased19.0% (30,662 participants) between FY 2012 andFY 2013.
Discussion
This study explored the allocation of MedicaidHCBS 1915(c) waiver funding for mental/behavioralhealth services for people with IDD across thenation. Two major trends of mental/behavioral
Figure 2. Hourly rates for mental/behavioralhealth services in fiscal year 2013.
Figure 3. Average service spending per participantreceiving these services in fiscal year 2013. Thisfigure details how much of each service’s projectedspending is allocated per participant for the mentalhealth services it provides.
Figure 4. The number of hours of service theaverage participant received in a year (FY 2013).
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
Texas 3 Behavioral Support; Social work $1,568,415
Utah 1 Behavior Consultation I; Behavior
Consultation II; Behavior Consultation III
$1,764,525
Virginia 2 Therapeutic Consultation; Crisis Stabilization;
Crisis Supervision
$653,871
Washington 1 Specialized Psychiatric Services; Sexual
Deviancy Evaluation; Behavior
Management and Consultation; Behavioral
Health Crisis Stabilization Services-
Specialized Psychiatric Services; Behavior
Support and Consutation (Privately-
Contracted and State-Operated); Crisis
Diversion Bed Services (Privately-
Contracted and State-Operated)
$1,947,227
Wisconsin 3 Counseling and Therapeutic Services Consults
and Hours; Counseling and Therapeutic
Resources
$9,566,599
West Virginia 1 Positive Behavior Support Professional; IPP
Planning-Positive Behavior Support
Professional; Therapeutic Consultant; IPP
Planning-Therapeutic Consultant; Crisis
Sevices
$17,203,832
Note. For more detail about each particular service as well as projected participants contact the lead author. HCBS¼Homeand Community Based Services; IDD ¼ intellectual and developmental disabilities; BSP/CIP ¼ behavioral support plan/crisis intervention plan; EIBI ¼ early intensive behavioral intervention; IPP ¼ individual program plan; FBA ¼ functionalbehavior assessment.
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
services were identified: behavioral/therapeutic ser-vices or crisis services. Behavioral/therapeutic ser-vices often included development of BSPs andbehavioral intervention, and therapy and counseling.Crisis services included immediate intervention,environmental analysis, supervision, counselingand/or therapeutic services, and support during thecrisis. Most services could be provided in any setting–particularly the one in which the crisis was occurring.The goal was often to prevent the individual frombeing placed in a more restrictive institutionalizedsetting. FY 2013 waivers projected $327.78 million to95,881 waiver participants for mental health services.However, there appears to be a lack of commitmentacross states as 48.8% of waivers providing mental/behavioral health services in FY 2013 projectedspending less than 1% of their total projected budgetfor these services.
One of our core findings was the extremevariance that exists across mental/behavioralhealth services. Spending for mental health servic-es ranged greatly across the 99 waivers from $18 to$109.8 million. The average annual projectedspending per participant receiving these servicesvaried largely from $18 to $212,892 per participant.The number of hours of service the averageparticipant received in a year also ranged widelyfrom one-quarter of an hour to 1,000 hr. Moreover,these waivers projected hourly pay rates rangingfrom $8.60 to $1,400 an hour.
The low proportion of HCBS 1915(c) spendingon mental/behavioral health services is a potentialproblem for those transitioning from institutional tocommunity-based settings. A recent study byLulinski (2014) found that less than half (46%) ofthe agencies providing residential services to formerinstitutional residents in the state of Illinoisindicated that they had access to a mental/behavioral health professional. Although there areno universally accepted standards about how manymental health service hours or how much spendingper person is sufficient, Wang et al. (2005) suggestthe following minimally adequate treatment guide-lines (general, not IDD specific) ‘‘based on availableevidence-based guidelines,’’ (pp. 630-631):
receiving either pharmacotherapy (� 2 monthsof an appropriate medication for the focaldisorder plus . 4 visits to any type ofphysician) or psychotherapy (� 8 visits withany HC [health care] or HS [human services]professional lasting an average of � 30
minutes). The decision to require 4 or morephysician visits for pharmacotherapy was basedon the fact that 4 or more visits for medicationevaluation, initiation, and monitoring aregenerally recommended during the acute andcontinuation phases of treatment in availableguidelines. . .. At least 8 sessions were requiredfor minimally adequate psychotherapy basedon the fact that clinical trials demonstratingeffectiveness have generally included 8 psy-chotherapy visits or more. . ..Treatment ade-quacy was defined separately for each 12-month disorder (i.e., a respondent with co-morbid disorders could be classified as receiv-ing minimally adequate treatment for onedisorder but not for another). (pp. 630-631)
Lulinski’s (2014) study found that 91% of surveyrespondents indicated they had used police/911/Emergency Medical Services; this overreliance onthese methods to obtain assistance, along with thelack of agency access to mental/behavioral healthservices (Lulinski, 2014) highlights the inadequateavailability of services suggested by our findings.
This study was limited by the lack of access tosome waiver applications. We were aware of at leastsix other FY 2013 and nine other FY 2012 waiverapplications that were not publicly available forexamination. It is unknown what effect thesewaivers would have had on our results as it ispossible that these waivers were also providingmental/behavioral health services. This limitationmust be considered when interpreting thesefindings. Another study limitation was that HCBSwaiver spending was based on spending projectionsrather than actual expenditures. However, becausethe proposed figures are based on previous years’actual utilization, we believe they are a reasonablyaccurate proxy of services.
As the public institutional census continues todecline, it will become necessary to boost fundingfor treatment options for people with behavioralchallenges, as they are often the last to bedischarged from institutional settings (Mansell,2006; Wing, 1989). Given the estimate thatroughly one third of persons with IDD have a co-occurring psychiatric disability, current spendingon behavioral/mental health services seems insuf-ficient. States must shore up the capacity of theirHCBS 1915(c) waivers to support citizens whohave behavioral challenges in addition to IDD, inorder to assure that services continue to be
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
delivered in accordance with the Supreme Court’sOlmstead decision regarding individuals’ right toreceive services in the least restrictive environmentappropriate. Because mental/behavioral healthservices are crucial for successful community living,additional analyses of current and expected serviceneeds, community capacity to meet these needs,and the availability of necessary funding arewarranted to assure the needs of all people withIDD are met.
References
Allott, K. A., Francey, S. M., & Velligan, D. I.(2013). Improving functional outcome usingcompensatory strategies in comorbid intellec-tual disability and psychosis: A case study.American Journal of Psychiatric Rehabilitation,16(1), 50–65. doi: 10.1080/15487768.2013.762306
Borthwick-Duffy, S. A. (1994). Epidemiology andprevalence of psychopathology in people withmental retardation. Journal of Consulting andClinical Psychology, 62(1), 17–27. doi: 10.1037/0022-006X.62.1.17
Braddock, D., Hemp, R., Rizzolo, M. C., Haffer, L.,Tanis, E. S., & Wu, J. (2015). The state of thestates in intellectual and developmental disabilities:Emerging from the great recession. Washington,DC: The American Association on Intellectu-al and Developmental Disabilities.
Buckles, J., Luckasson, R., & Keefe, E. (2013). Asystematic review of the prevalence of psychi-atric disorders in adults with intellectualdisability, 2003–2010. Journal of Mental HealthResearch in Intellectual Disabilities, 6(3), 181–207. doi: 10.1080/19315864.2011.651682
Causby, V. D., & York, R. O. (1991). Predictors ofsuccess in community placement of personswith mental retardation. The British Journal ofMental Subnormality, 37, Part 1(72), 25–34.
Charlot, L., & Beasley, J. B. (2013). Intellectualdisabilities and mental health: United States–based research. Journal of Mental Health Re-search in Intellectual Disabilities, 6(2), 74–105.doi: 10.1080/19315864.2012.715724
Deb, S., Thomas, M., & Bright, C. (2001). Mentaldisorder in adults with intellectual disability:Prevalence of functional psychiatric illnessamong a community-based population aged
between 16 and 64 years. Journal of IntellectualDisability Research, 45(6), 495–505. doi: 10.1046/j.1365-2788.2001.00373.x
Eiken, S. (2011, September). Revisiting the NameGame: A taxonomy of home and community-based services. Paper presented at the NationalHome and Community-Based Services Con-ference, Washington, DC.
Einfeld, S. L., Ellis, L. A., & Emerson, E. (2011).Comorbidity of intellectual disability andmental disorder in children and adolescents:A systematic review. Journal of Intellectual andDevelopmental Disability, 36(2), 137–143. doi:10.1080/13668250.2011.572548
Friedman, C., Rizzolo, M. C., & Schindler, A.(2014). Dental services: A nationwide study ofMedicaid Home and Community-Based Servic-es (HCBS) waiver service allocation. Inclusion,2(1), 17–36. doi: 10.1352/2326-6988-2.1.17
Hemp, R., Braddock, D., & King, M. (2014).Community-based Medicaid funding for peoplewith intellectual and developmental disabili-ties. National Conference of State LegislaturesLegisBrief, 22, 1–2.
The Henry J. Kaiser Family Foundation. (2012a).Medicaid benefits: Inpatient hospital and nursingfacility services in institutions for mental diseases,age 65 and older. Retrieved from http://kff.org/medicaid/state-indicator/inpatient-hospital-nursing-facility-and-intermediate-care-facility-services-in-institutions-for-mental-diseases-age-65-and-older/
The Henry J. Kaiser Family Foundation. (2012b).Medicaid benefits: Psychologist services. Retrievedfrom http://kff.org/medicaid/state-indicator/psychologist-services/
The Henry J. Kaiser Family Foundation. (2012c).Medicaid benefits: Public health and mental healthclinics (clinic services by an organized facility orclinic not part of a hospital). Retrieved fromhttp://kff.org/medicaid/state-indicator/clinic-services-by-an-organized-facility-or-clinic-not-part-of-a-hospital-public-health-and-mental-health-clinics/
The Henry J. Kaiser Family Foundation. (2012d).Medicaid benefits: Rehabilitation services – mentalhealth and substance abuse. Retrieved fromhttp://kff .org/medicaid/state-indicator/rehabilitation-services-mental-health-and-substance-abuse/
Intagliata, J., & Willer, B. (1982). Reinstitution-alization of mentally retarded persons success-
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
fully placed into family-care and group homes.American Journal of Mental Deficiency, 87(1),34–39.
Kim, S., Larson, S. A., & Lakin, K. C. (1999).Behavioral outcomes of deinstitutionalization forpeople with intellectual disabilities: A review ofstudies conducted between 1980 and 1999 (PolicyResearch Brief Vol. 10). Minneapolis, MN:University of Minnesota, Institute on Com-munity Integration.
Lakin, K. C., Hill, B. K., Hauber, F. A., &Bruininks, R. H. (1983). New admissions andreadmissions to a national sample of publicresidential facilities. American Journal of MentalDeficiency, 88(1), 13–20
Lakin, K. C., Larson, S. A., & Kim, S. (2011).Behavioral outcomes of deinstitutionalization forpeople with intellectual and/or developmental disabil-ities: Third decennial review of U.S. studies, 1977-2010 (Policy Research Brief Vol. 21). Minneap-olis, MN: Research and Training Center onCommunity Living, Institute on CommunityIntegration, University of Minnesota.
Larson, S. A., & Lakin, K. C. (1989). Deinstitu-tionalization of persons with mental retarda-tion: Behavioral outcomes. Journal of theAssociation for Persons With Severe Handicaps,14(4), 324–332.
Larson, S.A., & Lakin, K. C. (2012). Behavioraloutcomes of moving from institutional tocommunity living for people with intellectualand developmental disabilities: U.S.-studiesfrom 1977 to 2010. Research & Practice forPersons with Severe Disabilities, 37(4), 235–246.doi: 10.2511/027494813805327287
Lulinski, A. (2014). Community capacity to providemental/behavioral health services to people withdevelopmental disabilities (Unpublished doctoraldissertation.) University of Illinois at Chicago.
Lulinski-Norris, A., Rizzolo, M. C., & Heller, T.(2012). An analysis of movement from stateoperated developmental centers in Illinois. Chica-go, IL: Institute on Disability and HumanDevelopment, University of Illinois at Chicago.
Mann, C., & Hyde, P. S. (2013). Coverage ofbehavioral health services for children, youth, andyoung adults with significant mental healthconditions. Baltimore, MD: Centers for Medi-care & Medicaid Services.
Mansell, J. (2006). Deinstitutionalisation andcommunity living: progress, problems andpriorities. Journal of Intellectual and Develop-
Mansell, J., & Beadle-Brown, J. (2004). Person-centered planning or person-centered action?Policy and practice in intellectual disabilityservices. Journal of Applied Research in Intellec-tual Disabilities, 17, 1–9. doi: 10.1111/j.1468-3148.2004.00175.x
McIntyre, L. L., Blacher, J., & Baker, B. L. (2002).Behavior/mental health problems in youngadults with intellectual disability: The impacton families. Journal of Intellectual DisabilityResearch, 46(3), 239–249. doi: 10.1046/j.1365-2788.2002.00371.x
National Association for the Dually Diagnosed.(2014). Information on dual diagnosis. Retrievedfrom http://thenadd.org/resources/information-on-dual-diagnosis-2/
National Association of State Directors of Devel-opmental Disabilities Services & HumanServices Research Institute. (2012). Nationalcore indicators: Annual summary report 2011-2012. Alexandria, VA: National Association ofState Directors of Developmental DisabilitiesServices & Human Services Research Institute.
National Core Indicators. (2015). About NationalCore Indicators. Retrieved from http://www.nationalcoreindicators.org/about/
Olmstead v. L.C., 119 S.Ct. 2176 (1999). (S.Ct.1999).
Peebles, V. & Bohl, A. (2014). The HCBStaxonomy: A new language for classifyinghome- and community-based services. Medicareand Medicaid Research Review, 4(3), E1–E17.doi: 10.5600/mmrr.004.03.b01.
Perez, Thomas E. (2012, June 21). AssistantAttorney General Thomas E. Perez TestifiesBefore the U.S. Senate Committee on Health,Education, Labor and Pensions, Retrieved fromhttp://www.justice.gov/crt/opa/pr/speeches/2012/crt-speech-120621.html.
Rizzolo, M. C., Friedman, C., Lulinski-Norris, A.,& Braddock, D. (2013). Home and Commu-nity Based Services (HCBS) Waivers: Anationwide study of the states. Intellectual andDevelopmental Disabilities, 51(1), 1–21. doi: 10.1352/1934-9556-51.01.001
Schalock, R. L., Harper, R. S., & Genung, T.(1981). Community integration of mentallyretarded adults: Community placement andprogram success. American Journal of MentalDeficiency, 85(5), 478–488.
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
Windle, C. D., Stewart, E., & Brown, S. J. (1961).
Reasons for community failure of released
patients. American Journal of Mental Deficiency,
66, 213–217.
Wing, L. (1989). Hospital closure and the resettlementof residents: The case of Darenth Park MentalHandicap Hospital. Aldershot, UK: Ashgate.
Received 8/11/2014, accepted 4/21/2015.
This article was sponsored in part by a grant from the
Administration on Intellectual and DevelopmentalDisabilities (90DN0296).
Authors:Carli Friedman, University of Illinois at Chicago;Amie Lulinski, The ARC of the United States,Washington, DC; and Mary C. Rizzolo, Universityof Illinois at Chicago.
Correspondence concerning this article shouldbe addressed to Carli Friedman, University ofIllinois at Chicago, Disability and HumanDevelopment, 1640 W. Roosevelt Road,Chicago, IL 60608 United States of America(e-mail: [email protected]).
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES �AAIDD
Copyright of Intellectual & Developmental Disabilities is the property of AmericanAssociation on Intellectual & Developmental Disabilities and its content may not be copied oremailed to multiple sites or posted to a listserv without the copyright holder's express writtenpermission. However, users may print, download, or email articles for individual use.
