MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES …€¦ · supports for persons with intellectual and developmental disabilities ... intellectual disability; ... the individuals

RESIDENTIAL SUPPORTS FOR PERSONS WITH

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

K. Charlie Lakin* and Roger J. StancliffeResearch and Training Center on Community Living, University of Minnesota, Minneapolis, Minnesota

This article reviews the current and changing status of residentialsupports for persons with intellectual and developmental disabilities (ID/DD). It examines four major trends in those supports: (1) Decreasing useof larger institutions and increasing use of community housing; (2)Decreasing size among community settings; (3) Increasing numbers ofpeople living in homes that they themselves own or rent; and (4)Decreasing out-of-home placements of children and youth. Within eachtrend the article provides a statistical description of the trend, its found-ation in public policy, reviews the evidence of the trend’s benefit topeople with ID/DD, and identifies future challenges in sustaining thetrend. ' 2007 Wiley-Liss, Inc.MRDD Research Reviews 2007;13:151–159.

Key Words: intellectual disability; developmental disability; community

living; residential; supported living

RESIDENTAL SUPPORTS FOR PERSONS WITHINTELLECTUAL AND DEVELOPMENTALDISABILITIES

Residential services and supports for persons with intel-lectual and developmental disabilities (ID/DD) havebeen changing along political, philosophical, and

physical dimensions in recent decades. ‘‘Residential supports’’refers to those services and supports provided to people withID/DD who do not live at home with family. This distin-guishes residential supports from family supports, the topic ofanother article in this issue [Turnbull et al., 2007]. This articleis organized around four dimensions of the changing patternof residential supports: (1) Decreasing use of larger institutionsand increasing use of community housing; (2) Decreasing sizeof community settings; (3) Increasing numbers of people livingin homes that they themselves own or rent; and (4) Decreas-ing out-of-home residential placements of children and youth.Each of these dimensions is documented, its policy foundationis described, the body of evidence regarding the benefits ofthe trend to people with ID/DD is reviewed, and the futurechallenges in sustaining the trend are examined.

FROM INSTITUTIONAL TO COMMUNITYSERVICES

TrendSince 1967, and especially since 1977, a major shift has

taken place in the use of institutional settings (defined here asplaces with 16 or more residents) to provide residential sup-ports to persons with ID/DD. In June 1977, an estimated

207,356 (83.7%) of the 247,780 persons with ID/DD receiv-ing residential services lived in public and private institutionalsettings with 16 or more residents. Twenty-eight years later, inJune 2005, just 67,066 (16.3%) of the estimated 411,215 per-sons receiving residential services lived in institutional settings.During this same period, the number of residents in ‘‘commu-nity’’ settings with 15 or fewer residents increased from 40,424to 344,152 persons and the number of persons with ID/DDliving in nursing facilities decreased by 12,755 persons [Proutyet al., 2006].

Figure 1 shows the decreasing use of institutional ser-vices during the past three decades, specifically in June of 1977,1987, 1995, and 2005. It shows the decreasing number of peo-ple with ID/DD in three types of institutional settings: (1) pub-lic institutions for persons with ID/DD; (2) private institutionsfor persons with ID/DD; and (3) nursing facilities. As a pointof contrast it also shows the rapidly growing number of peoplewith ID/DD receiving residential services in community set-tings of 15 or fewer persons in those same years.

Policy FoundationThe Center for Disease Control and Prevention’s

(CDC) Healthy People 2010 noted the importance of thesechanges for persons with ID/DD:

Institutionalization and other forms of congregate care are inconsistent withpositive public health policy and practice. They diminish people’s opportuni-ties to realize essential features of human well-being: choice, control, ability toestablish and pursue personal goals, family and community interaction, privacy,freedom of association and the respect of others (National Center on BirthDefects and Developmental Disabilities (NCBDDD), 2003, p. 181).

The federal government has supported these trendsalthough not unambiguously until the passage of the Ameri-cans with Disabilities Act (ADA) [1990]. In Olmstead et al. vs.L.C. et al. [1999 (527 U.S. 581)], the US Supreme Courtaffirmed that the ADA requires states to provide services forpeople with disabilities in the ‘‘most integrated setting appro-

Grant sponsor: Administration on Developmental Disabilities; Grant number:90DN0200/01.*Correspondence to: K. Charlie Lakin, Research and Training Center on Com-munity Living, University of Minnesota, 214 Pattee Hall, 150 Pillsburry Dr. SEMinneapolis, MN 55455. E-mail: [email protected] 3 January 2007; Accepted 5 January 2007Published online in Wiley InterScience (www.interscience.wiley.com).DOI: 10.1002/mrdd.20148

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIESRESEARCH REVIEWS 13: 151 – 159 (2007)

' 2007Wiley -Liss, Inc.

priate,’’ and that states are obligated toplace people with disabilities in com-munity settings when treatment profes-sionals determine such settings areappropriate; the individuals themselvesdo not oppose such placement; and thestate can reasonably accommodate com-munity placement, given its availableresources. On June 18, 2001, PresidentGeorge W. Bush signed an ExecutiveOrder acknowledging the Olmstead de-cision that ‘‘unjustified isolation or seg-regation . . . is a form of disability-baseddiscrimination prohibited by Title II ofthe ADA’’ . . . and stated that the nation‘‘is committed to community-basedalternatives for individuals with disabil-ities.’’ Of course, states design and oper-ate their own residential services pro-grams; the federal government simplyreimburses through Medicaid 50–76%of the costs of programs that meet min-imum federal standards.

Evidence of BenefitThere has been extensive research

comparing lifestyles of persons living incommunity and institutional settings. Theresearch establishes clearly and consistentlythat individuals with ID/DD experiencegreater personal freedom, more participa-

tion in social activities, more frequent asso-ciations with family and friends when liv-ing in the community rather than institu-tional settings [Horner et al., 1988;Stancliffe and Lakin, 1998; Stancliffe andLakin, 2005]. Perhaps such outcomes seemself-evident products of community inclu-sion as opposed to segregation. Other im-portant outcomes are less so.

Functional skill improvementOne important outcome of resi-

dential supports is development of func-tional skills that increase individual in-dependence. Since 1980, there havebeen more than 3-dozen studies com-paring changes over time in functionalskills associated with people’s movementfrom institutions to community settings.Kim et al. [2001] reviewed all US stud-ies conducted between 1980 and 1999that met a common set of research qualityand design standards. This review ana-lyzed 33-longitudinal studies of bothexperimental/contrast group and pre-and post-test designs that followed ap-proximately 2,500 individuals with ID/DD for periods ranging from 6 monthsto 7 years of postinstitutional living.These studies document substantial andconsistent longitudinal increases infunctional skill levels (‘‘adaptive behav-

ior’’) for persons moving from institu-tions to community settings. Specifi-cally, of 27 longitudinal studies of gen-eral adaptive behavior, 18 foundstatistically significant benefit to leavinginstitutions for community settings, and7 found adaptive behavior improve-ments greater in people moving to thecommunity but the difference did notreach statistical significance. Two stud-ies, one reaching statistical significance,showed better outcomes for thoseremaining in institutions. In studies ofspecific skill areas, community samplesdemonstrated positive change in ‘‘socialskills’’ in 13 of 13 studies; ‘‘self-care anddomestic skills,’’ in 13 of 14 studies; andin ‘‘community living skills’’ in 10 of 10studies.

Parent attitudesLarson and Lakin [1991] analyzed

27 studies and found that prior parentalsatisfaction with institutional care andreservations about community living intime turn into positive attitudes aboutcommunity services (more than 80%satisfaction in 9 of 10 studies). Tossebroand Lundeby [2006] reported a similarlong-term change toward families pre-ferring community services followingdeinstitutionalization.

Fig. 1. Persons with ID/DD in institutions and community residential settings in June of 1977, 1987, 1995, and 2005.

152 MRDD Research Reviews DOI 10.1002/mrdd � RESIDENTIAL SUPPORTS FOR PERSONS WITH ID/DD � LAKIN AND STANCLIFFE

Cost effectivenessWith substantial, growing and of-

ten unmet demand for supports, thecost-effectiveness of residential servicesis highly relevant. Although institutionalpopulations are decreasing, institutions’‘‘fixed costs’’ remain [Stancliffe et al.,2005]. As state institution populationsdecreased from 154,638 to 40,061 be-tween 1977 and 2005, the cost per per-son of operating institutions increasedfrom $52,077 per year (constant 2005dollars) to $148,810 per year [Proutyet al., 2006]. As a result, decreasing stateinstitution populations by 74% onlyyielded real dollar savings of 24%.

Challenges in Sustaining the TrendThe major challenge in sustaining

the movement from institutional to com-munity settings is major state differencesin commitment to doing so. In 2005,more than 60% of all state institution resi-dents lived in the one-third of all states(17) that have been slowest in depopulat-ing state institutions. In 1990, those same17 states had housed only 42% of all stateinstitution residents [Prouty et al., 2006].Because these slower moving states nowhouse 60% of state institution residents,the average annual national decrease instate institution populations between 2001and 2005 was the lowest since dein-stitutionalization began in 1967 [Proutyet al., 2006].

DECREASING SIZE OFCOMMUNITY SETTINGS

TrendRecent decades have produced

not only rapid growth in the overallnumber of people with ID/DD receiv-ing residential supports in the commu-nity, but also an equally notable trendtoward supports being provided insmaller residential settings. Figure 2shows these trends between 1977 and2005 [Prouty et al., 2006]. In 1977almost half (49.5%) of the 40,424 per-sons receiving community residentialsupports in community settings of 15 orfewer residents lived in group homes of7–15 residents. By 2005, the total num-ber of people receiving community resi-dential supports was 8.5 times greaterthan in 1977, reaching an estimated344,149 people, but only 15.4% receivedcommunity residential supports in placesof 7–15 residents. In contrast, the num-ber of people with ID/DD living insettings with three or fewer personsincreased by 21 times from an estimated8,680 people in June 1977 (21.5% ofthe total) to 184,024 people (53.5% ofthe total) in June 2005.

Policy FoundationThe ADA [1990] and the subse-

quent Olmstead decision recognized theinterests of persons with disabilities in

avoiding segregation and their rights toaccommodations to do so. Residentialexperiences in typical communities havebeen viewed as an important aspect ofsecuring such benefits. Most of theearly research on outcomes comparedinstitutional and community settings,which involve differences in both resi-dence size and type, thus providing littleinsight into the effect of size per se.This focus derived primarily from thepolicy issues arising in an era of deinsti-tutionalization, which persist in somestates. However, the significance ofinstitutions continues to decrease andwith more than 80% of recipients livingin community settings, research atten-tion has shifted to the effects of sizewithin the range of community settings.

Evidence of BenefitBecause size ranges in community

residential settings are relatively re-stricted by the operational definition ofcommunity settings as not having morethan 15 residents and also because 85%of persons living in community residen-tial settings live in places of six or fewer,the power to discriminate differences isoften limited. Still, a number of studieshave indicated that smaller sizes withinthe range of community settings areassociated with more desirable out-comes. Lakin et al. [2006] analyzed fivestates’ data on (a) personal choice in

Fig. 2. Changing sizes of homes among community residential settings on June 30 of 1977, 1987, 1995, and 2005.

MRDD Research Reviews DOI 10.1002/mrdd � RESIDENTIAL SUPPORTS FOR PERSONS WITH ID/DD � LAKIN AND STANCLIFFE 153

daily activities and choices related tohomes, housemates and service pro-viders; (b) nature and severity of disabil-ity, and (c) size of residence (1–2, 3–4,5–6, 7–8, and 9þ persons living awayfrom family and persons living withfamily members). Controlling for levelof intellectual disability, ‘‘personalchoice’’ in daily activities was associatedwith smaller sizes of residence as was‘‘support related choice’’ regardingwhere they live, support agencies andindividual direct support providers. Inrelated analyses, residents of 1–2 personhomes had more personal choices thanresidents in larger homes. Controllingfor level of ID, size of residence had lessnotable, but still significant associationwith support-related choice. Stancliffeand Lakin [2005] found those living insettings of 1 or 2 people to have sub-stantially more freedom from staff con-trol than people living in larger com-munity settings. Other researchers havereported similarly better outcomes forchoice and self-determination amongindividuals living in smaller scale set-tings [e.g., Tossebro, 1995; Stancliffe,1997, 2005; Howe et al., 1998; Perryet al., 2000; Stancliffe and Keane, 2000Stancliffe et al., 2000].

Stancliffe et al. [2006] analyzedself-reported satisfaction and well-beingoutcomes in six states and found resi-dents of larger settings, especially >6residents, more likely to report loneli-ness and less likely to say they likedwhere they lived. Of particular interestin this study were the higher ratings ofwell-being reported by the adults livingwith family members when comparedwith adults being supported outside thefamily home. Adults with ID/DD athome were less likely than others toreport loneliness, feeling fear in thehome, feeling sad, and more likely toreport liking where they were living.

Findings of no association betweenresidential setting size and desirable com-munity living outcomes appear particu-larly likely to occur in studies, in whichthe range of setting sizes is relatively nar-row and/or the sample size is relativelysmall [e.g., Stancliffe and Lakin, 1998;Felce et al., 2002]. Overall, the weight ofevidence suggests various benefits of liv-ing like other citizens, in very small com-munity settings. But findings of no size-related outcome differences have alsobeen reported. A complicating factor ininterpreting such research is that differen-ces in residence size may also be associ-ated with differences in service type(group home, semi-independent, sup-ported living), staffing arrangements and

other factors, but few studies, generallybecause of small sample size, have beenable isolate the influence of such factors[Tossebro, 1995].

Challenges in Sustaining the TrendThe continuation of movement of

people to smaller community settings ischallenged in many of the same ways ascontinuing the process of deinstitution-alization, with the two most prominentchallenges being interstate variabilityand the demands placed on the directsupport workforce [reviewed in Hewittand Larson, in this issue].

Interstate variabilityAs shown in Figure 2, nationally

in 2005 over one half (53.5%) of resi-dential service recipients in the US livedin settings of three or fewer personswith ID/DD, however, states differedsubstantially on this statistic. In June2005, in seven states more than 70% ofmore of residential service recipientswith ID/DD lived in places with threeor fewer residents while in 13 statesfewer than 35% did.

FROM AGENCY HOUSINGTO HOMES OF ONE’S OWN

TrendIncreasingly, national expectations

regarding access to community livingassume more than community housing.These expectations are often expressedin the concept of ‘‘supported commu-nity living’’ [Bradley et al., 1994; Lakinand Smull, 1995]. Supported livinggoals include that:

� People will have ‘‘real homes’’in places where they ‘‘controltheir own front doors,’’ andchoose their homes and thepeople with whom they live.

� Choice of settings for everydayliving will not subsume choosingservices and supports for thosesettings; i.e., people will not becompelled to choose certain liv-ing sites because assistance theyneed is located only in thosesites.

� People will be helped to definethe lifestyles they want and sup-ported in achieving them, andwhere their experiences havebeen limited, people are helpedto develop and express lifestylepreferences.

The reflection of such principles isfound in statistics on the number ofpeople living in homes that they (often

with financial help from their families)rent or own for themselves and intowhich residential supports are broughtas needed. Figure 3 summarizes thesetrends.

As shown in Figure 3, in the dec-ade between June 1995 and June 2005the number of people with ID/DDreceiving residential support outside ofhomes they shared with family mem-bers in homes that were owned orrented in their names (‘‘own homes’’)increased substantially. In June 1995there were 40,881 persons with ID/DDreceiving residential supports in theirown homes (13.0% of all service recipi-ents). By June 2000 the number of peo-ple with ID/DD receiving residentialsupports in their own homes had in-creased to a reported 73,147 persons(19.5% of all residential service recipi-ents). In June 2005 states reported101,143 persons with ID/DD receivingresidential supports in their own homes(24.6% of all reported residential servicerecipients).

Policy FoundationThe principles of supported com-

munity living are intended to produce afundamental shift in thinking about notjust the places in which people live, butto shift power toward people with dis-abilities in decisions about how theylive, work, and participate in their com-munities. Living in one’s own homechanges the dynamics of service-deliv-ery, because the home is not dependenton a continuing relationship with aservice provider. It establishes an easilyunderstood status, in which the personcontrols who enters their home. Spe-cific living arrangements and theamount and arrangements of paid andnatural supports are designed differentlyfor each individual, based on decisionsamong competing priorities as withother citizens (e.g., the cost of housingagainst other spending options). A keyfeature in supported living is fosteringand developing of natural supports[Bradley et al., 1994; Howe et al.,1998]. The growing understanding ofthe importance of natural supports and/or benefactors has led to efforts tostructure ‘‘circles of support’’ made upof people committed to assisting theperson in achieving personal life goals[Ducharme et al., 1994; Bradley et al.,2001]. Recently, efforts to limit formal,paid support providers, and to enhanceopportunities for and commitment of‘‘natural supports’’ has led to provisionswithin HCBS programs to allow pay-ment to family members. Such pay-


ments often permit family members toprovide the time needed to assure highquality support from people who knowthe individual best.

Evidence of BenefitContemporary research compar-

ing different types of community livingarrangements shows that smaller, morenormalized community living arrange-ments, such as (semi-)independent liv-ing and supported living are associatedwith better outcomes.

Semi-independent and independent livingComparisons of individuals living

in group homes (full-time staffing) or insmaller semi-independent households(drop-in staff support) reveal better out-comes for semi-independent settings on:choice, self-determination, autonomy,satisfaction, independence, lifestyle nor-malization, physical and social integra-tion, domestic participation, communityparticipation, and personal well being[Burchard et al., 1991; Stancliffe andWehmeyer, 1995; Stancliffe, 1997, 2005;Wehmeyer and Bolding, 1999; Stancliffeand Keane, 2000; Stancliffe et al., 2000 ].Loneliness, self-care, domestic manage-ment, personal safety, money manage-ment, and health are potential areas ofconcern for semi-independent residents,but Stancliffe [2005] and Stancliffe andKeane [2000] reported that these out-comes did not differ from those experi-

enced by group-home residents, eventhough the former received much lessstaff support.

Supported livingSupported living participants gen-

erally own or rent their own home(controlling one’s own home is a centralaspect of supported living). Supportedliving participants have been reportedto experience a greater variety and fre-quency of community and social activ-ities, more participation in preferredactivities, better compatibility with liv-ing companions, and greater self-deter-mination than participants in ‘tradi-tional’ community services [Howe et al.,1998]. Individuals receiving support intheir own homes exercise greater con-trol over choice of living companionsthan residents of more traditional com-munity settings [Howe et al., 1998;Emerson et al., 2001].

Choosing where and with whomto live is a defining feature of supportedcommunity living [see Howe et al.,1998]. Gardner and Carran [2005]found a consistent and significant posi-tive relation between the outcome‘‘People chose where and with whomto live’’ and a number of other impor-tant outcomes, such as safety, and free-dom from abuse and neglect.

Head and Conroy [2005] foundsubstantial increases in control by ser-vice users and/or their families over

services, supports, and where and withwhom to live following implementationof consumer-directed services in Michi-gan, although it was not clear to whatextent this was achieved through livingin one’s own home. Even so, these find-ings do illustrate that considerableincreases in control are possible withreform of traditional funding and serv-ice provision arrangements. However, itis important to note that such controldoes not pass ‘‘automatically’’ to con-sumers when reform is implemented.For example, Howe et al. [1998] foundthat supported community living resi-dents did not determine the supportsthey received to any greater extent thanresidents of traditional services.

It has not been established empir-ically, which features of supported com-munity living are functionally linked tobetter client outcomes. Stancliffe [2005]found better outcomes for people livingsemi-independently than for group-home residents, and argued that becauseof frequent staff absence, people withintermittent support in their ownhomes not only had opportunities forindependent participation, their circum-stances demanded participation.

How broadly applicable are theresults just discussed to individuals withdiffering support needs? Almost all ofthe studies cited earlier involved peoplewith lower support needs, but individu-als with severe disability likely do poorly

Fig. 3. Persons with ID/DD receiving residential support while living in their own homes (excluding nursing facilities).


given little support. Where independentliving had the best outcomes for thosewith mild/moderate ID, those withsevere/profound disability achieved thepoorest outcomes when living inde-pendently, and did better in supportedliving arrangements with more support[Gardner and Carran, 2005]. Jones et al.[2001] found that increased staff supportfor participation resulted in greater resi-dent participation in activities. However,the benefits were greater for individualswith more severe disability. So, whileregularly undertaking activities inde-pendent of staff support is associatedwith skill development and achievementof personal outcomes for people withlower support needs, it is not for personswith severe disability, who insteadrequire active support from caregiversfor successful participation in meaningfulactivities.

Challenges in Sustaining the TrendThe higher level of support

needed by people with more severe dis-abilities provides a greater challenge inassisting them to live in personal hous-ing. The per-person cost of providingpaid supports is one important suchchallenge. Felce and Emerson [2005]reviewed the evidence related to econo-mies/diseconomies of scale in residentialservices research in the United King-dom. They concluded that no econo-mies of scale could be established in theexisting research, except in very smallresidential settings, in which thedecreased number of people in thehome necessitated an increased staffingratio. The critical point is reached atwhich there is a need for one staffmember at all times, so that if the num-ber of people in the home furtherdecreased, the ratio of staff to residentsnecessarily increases. Unless nonpaid ordifferently paid supports are introduced,the per-person cost of support increases.‘‘Such diseconomies of very small scaleapply only in residential services whenthe service model or the residents’ sup-port needs require continuous paid staffpresence’’ [Lakin and Stancliffe, 2005, p.324]. This is most often the case forpersons with severe disabilities.

Environmental accommodations aredesigned to change environmental de-mands and expectations so that an indi-vidual can fulfill a typical social role.Accommodations may permit an individ-ual to live in their own home withoutfull-time care and supervision, and in theprocess reduce levels of support and cost,while yielding the benefits described ear-lier. Accommodations may include physi-

cal modifications (e.g., ramps, redesignedkitchens and bathrooms), technologies(e.g., alerting systems, one-touch dialphones), modified supports (e.g., phonecalls, training in independent living skillsrather than personal care, coresidencywith a person without disability), or care-fully selecting environments (e.g., choos-ing housing located near shops, family,and/or work to decrease travel demandsfor a person without independent publictransportation skills). Expansion andimprovement of quality and accessibilityaccommodations is central to the grow-ing efforts to assist people to live inhomes of their own with as much inde-pendence as possible.

Cost is a fundamental barrier topeople with ID/DD having their ownhome. Rental affordability has becomemarkedly worse in recent years. Thishas a marked effect on people whodepend on Social Security cash pay-ment programs [O’Hara and Cooper,2005]. In 2004 Federal Social SecurityDisability Programs (SSI) paymentsplus state SSI supplements averaged$617 per month, while nationally, av-erage rent for a one-bedroom unit rep-resented 110% of this amount, and96% for a studio/efficiency apartment(ranging from 61.7% in North Dakotato 162.2% in the District of Columbia)[O’Hara and Cooper, 2005]. This con-trasts with the situation in 1998 whenthe average rent for a one-bedroomunit was 69% of SSI, and 58% for astudio/efficiency unit [O’Hara andCooper, 2005].

Supports for housing affordabilitydo exist, most notably rental assistanceavailable under the Section 8 voucherprogram of the Department of Housingand Urban Development. Howeverwaiting lists are long, and the applica-tion process is challenging for individu-als with ID/DD who do not have ad-vocacy support [Galbraith, 2001]. Theeffect of the crisis in affordability ofrental housing is that people with dis-abilities who depend on SSI (or SSDI)have no option but to share housingwith others.

Home ownership remains muchless likely for people with ID than thegeneral community [Maughan et al.,1999]. The poverty of people with ID/DD is a central factor in limited homeownership, but Medicaid and SSI assetlimits mean that most people with ID/DD are precluded from saving toward adown payment. Clearly, much moreneeds to be done regarding housingaffordability if greater numbers of adultswith ID/DD are to join their fellow

citizens in meaningful numbers in hav-ing a home of their own.

DECREASING OUT OF HOMEPLACEMENTS OF CHILDRENAND YOUTH

TrendAt any one time, less than 20% of

all persons identified as having ID/DDand about one-third of adults (18 andolder) receive residential services outsidetheir family homes [Jaskulski et al.,1995]. Without question, the entire sys-tem of residential support is dependenton sustaining high levels of family sup-port for members with ID/DD. Still,most social policy and resources thatsupport community access for personswith ID/DD have focused on peopleliving outside their family homes.While it has been important that mostpeople with ID/DD remain in theirfamily homes, the social commitmentto assure that children and youth do sohas been especially strong and remark-ably successful. Figure 4 depicts thissuccess. As shown in Figure 4, in 1977there were about 90,942 children andyouth with ID/DD (birth to 21 years)living away from their family homes inresidential settings operated under theauspices of state ID/DD program agen-cies. By 2005 that number had fallen to26,395. Put another way, between 1977and 2005 the total number of individu-als of all ages living in residential set-tings for persons with ID/DD increasedby 66% while the total number of chil-dren and youth in such settings de-creased by 71%. The trend was evenmore notable for children with ID/DD14 years and younger. Their numbers inresidential settings for persons with ID/DD decreased by 79%.

Policy FormulationOne objective in the CDC Healthy

People 2010 goals is to ‘‘reduce to zero thenumber of children [with disabilities] incongregate care’’ [NCBDDD, 2003]. Thisobjective to provide all children the op-portunity for family life reflects a broadnational commitment to permanencyplanning. Permanency planning is focusedon providing the natural experiences andbenefits of family life to children at riskof losing that important contribution totheir development. In the order of prior-ity, permanency planning encourages thefollowing: (1) support and training to anatural family to assist with raising achild; (2) temporary out-of-home place-ment with support in preparing for fam-ily reunification; (3) if reunification is not


in the child’s best interest, parental releaseand adoption of the child; (4) family fos-ter care; and, (5) the least restrictive non-family placement with movement to astable, permanent home a soon as possi-ble. Backed up by special education serv-ices; SSI for low income families; statefamily subsidy programs; respite care,personal care, other in-home and out-of-home support services, and consumer-directed supports available in Medicaidstate plan and HCBS programs, perma-nency planning commitments have im-portance in the major national success inreducing the number of children andyouth with ID/DD who are living inresidential settings.

Evidence of BenefitThere is a limited body of

research on long-term experiences andoutcomes in the following areas: fami-lies as primary care providers for adultswith ID/DD [Krauss and Seltzer, 1993;Parish et al., 2004]; lifestyle, autonomy,and development of persons with ID/DD who live with their families wellinto adulthood [Seltzer, 1985]; contri-butions that adult children make totheir families [Heller and Factor, 1993];the need for and contributions of familysupports to the well-being of familymembers with ID/DD [Hoyert andSeltzer, 1992]; variation in needs forand contributions of family supportsacross family life cycles [Roberto, 1993;Smith et al., 1995]; cost-benefits offamily supports in home and commu-nity services programs [Hewitt et al.,2000; Lewis and Johnson, 2005]; and,general family quality of life [Poston

et al., 2003]. In interviews with morethan 1,000 parents of children with ID/DD as a part of the National HealthInterview Survey��Disability Supple-ment, 53% of families with childrenwith ID/DD reported one or more ofthe following consequences: unemploy-ment or underemployment; changingor reducing work schedules; quitting orchanging jobs; changing sleep patterns;suffering severe financial problems. Thiscompares with 23% of families withchildren with disabilities, but not ID/DD [Anderson et al., 2002]. Fujiura[1998] and Lewis and Johnson [2005]also reported serious financial problemsfor families caring for a family memberwith developmental disabilities.

Other researchers have identifiedsimilar effects on family economic lifeand the strain this may place on familiesas they approach midlife with lowerincome, savings, and retirement benefitslevels [Parish et al., 2004]. In the pastdecade, policy makers have acknowl-edged the importance of specific supportsfor families with members with ID/DDliving at home. In 2004, states reportedspending an estimated $1.98 billion dol-lars to support families of persons withID/DD: $95 million in cash subsidiesand an estimated $1.89 billion in directfamily support services. This representeda 90% increase from four years earlier.Still, the expenditures reported by statesfor family support in 2004 were only6.5% of all estimated expenditures forstate services for persons with ID/DD,even though about 80% of all personswith ID/DD live with family members[Braddock et al., 2005].

Challenges to Sustain the TrendWhile support to families appears

to be increasing, the nature of familysupport programs, the needs for themand the uses of them are not well docu-mented. As well as direct services andfinancial supports to families, there isalso a need to develop the essentialinfrastructure of community support.Families need access to information; as-sistance in planning and managing sup-port; greater access, equity and controlof funding for persons living with theirfamilies; and availability of a qualifiedworkforce, to fund and deliver the sup-port [Lakin and Stancliffe, 2005].

Workforce issues also affect familysupport services. Lakin et al. [2005] foundexpenditures on family supports such asrespite and in-home supports in Minne-sota were only 70% of the authorizedamounts, largely as a result of the nona-vailability of staff to provide the author-ized hours of service. Failing to providefamily support services should be of se-rious concern both because families arenot getting the support they need and be-cause of the impact on demand for muchmore expensive out-of-home services.

CONCLUSIONGenerally the trends in residential

supports for persons with ID/DD are inthe directions of increased inclusion andself-determination as supported in na-tional laws and other policy commit-ments. There are, however, reasons forsignificant concerns about the capacity tosustain the rates and directions of changesassociated with these commitments.

Fig. 4. Children, youth, and adults receiving out-of-home residential supports for persons with ID/DD, 1977–2005 (excluding nursing facilities).


Medicaid which is the primary source offinancing services for persons with ID/DD has been increasingly a target ofscrutiny and cost-containment initiativesat the federal and state level. A steadilyaging population is increasing the chal-lenge and perhaps eventually the outrightcompetition for the resources needed ofincreasing numbers of persons with dis-abilities. Among the resources for whichcompetition will likely occur is theessential human resource of the directsupport workforce. Growing this alreadyscarce resource will require adequatewages, benefits and career opportunitiesall of which themselves will competewith resource demands of the growingpopulation of persons with disabilities.None of these are new challenges. Thelist of challenges today reads much likelists of the past and none of the chal-lenges of the past has broken the patternsof progress described earlier. Still, con-cern lingers and grows that there may bean approaching limit to US society’s ca-pacity or commitment to sustain histo-rical growth in services and expenditures.It is, therefore, of substantial importancethat cost-effective alternatives be to tradi-tional services and expenditures modelsbe identified and tested as primary meansof sustaining past achievements.

ACKNOWLEDGMENTSThe Research and Training Cen-

ter on Community Living receives coresupport from the National Institute onDisabilities and Rehabilitation Research,US Department of Education (Agree-ment No. H133B031116). The contentsof this article do not necessarily reflectthe official position of any sponsoringagency.

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