Emerging policy challenges in intellectual disabilities

EMERGING POLICY CHALLENGES

IN INTELLECTUAL DISABILITIES

Glenn T. Fujiura1* and Susan L. Parish21Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois2School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina

The forces shaping intellectual disability policy-making are diverse;while many of the policy issues reviewed in this issue are specific tointellectual disabilities, there are others that transcend disability-specificconcerns. Our review is organized around six emerging demo-graphic and socio-cultural trends that may directly and profoundly impactthe intellectual disability field: aging, changing labor markets, immigra-tion, families, federalism, and culture. Each of these trends is discussedin terms of their relevance and potential impact on disability policy.

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Key Words: policy analysis; demography; federalism; families

The nation’s response to its citizens with intellectual dis-ability has evolved in a dynamic policy environment.Major changes in economic conditions, legal prece-

dent, political conditions, medical technology, and philoso-phies of governance have time and again altered the landscapeof supports and services for persons with intellectual disabil-ities. Such external events and the policy challenges they pre-sent will most certainly play a significant role in shaping thefuture of the field as well. The intent of this analysis is not theprediction of future events, but rather to highlight forces notcommonly considered in the disability field that may be cru-cial in policy development. Dror [1994] employed the phrase,‘‘thinking-in-history’’ to refer to analysis of trends and proc-esses as a means to understand the future without being boundby the past (p. 7). It is not simply a matter of linear extrapola-tions to the future, but rather anticipating the forces that mayshape future circumstances. Our review is framed and organ-ized around these forces or ‘‘drivers,’’ to borrow a term fromthe field of scenario building [Coates, 2000; Tangredi, 2000].How does one identify these processes? There are no formal-ized methodologies for anticipating the future, but rather con-ceptual frameworks within which we attempt to tease out keythemes. We employ here the conventions of scenario builderswho begin their work with an ‘‘active scan’’ to detect earlysignals of themes in the macro-environment [Coates, 2000;Tangredi, 2000]. Though the labels may be unfamiliar, thetask and objectives are not; social forecasting has a long historyin the social sciences, particularly sociology [Henshel, 1982].

Discussing hypothetical futures is a delicate enterprise;future events are rarely predictable, omissions are likely, and

erroneous extrapolations are almost certain. However, the actof forecasting can be an extremely useful device for clarifyingthe potential impact of emerging but low visibility trends.That said, we begin with the core theme of the paper��intellec-tual disability issues and policy are situated in the context oflarger global forces, including demographic, political, and eco-nomic exigencies. It is not simply an intellectual disabilitiesagenda or a disability agenda, but rather a set of policy chal-lenges inextricably linked to domestic and increasingly globalpolicy concerns.

EMERGING POPULATION TRENDSPopulation change is a natural starting point for our dis-

cussion of emerging policy challenges; anticipating the impactof population trends represents the oldest form of sociologicalforecasting [Henshel, 1982] and is a familiar topic in intellec-tual disability policy discussions. Aging was identified as animportant intellectual disability policy issue in the 1980s [ Jan-icki and Wisniewski, 1985; Seltzer and Seltzer, 1985] and therecent debates over autism incidence are examples of thenexus of policy and demographics. The connection betweendemography and policy is hardly surprising. Subtle changes inthe underlying structure of populations can have profoundeffects on policy [Kraft, 1994] and the impact of demographictrends on policy making is a staple of the policy literature[Hoover, 2002]. To the extent that intellectual disability policyand practice serves a heterogeneous constituency with diverseneeds, changes in the distribution of subgroups within thelarger population with intellectual disabilities have importantpolicy implications. Further, shifts in the general populationare likely to have indirect but profound impacts on the intel-lectual disabilities service system.

The aging of populations in developed countries is sin-gular with respect to its policy implications. This fact has beenthe subject of intense scrutiny (e.g., Freedman et al., 2002;

Grant sponsor: National Institute on Disability and Rehabilitation Research; Grantnumber: H133B031134.*Correspondence to: Glenn T. Fujiura, Ph.D., Department of Disability and HumanDevelopment (MC 626), College of Applied Health Sciences, University of Illinoisat Chicago, 1640 W. Roosevelt Road, Chicago, IL 60608. E-mail: [email protected] 19 December 2006; Accepted 3 January 2007Published online in Wiley InterScience (www.interscience.wiley.com).DOI: 10.1002/mrdd.20152

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIESRESEARCH REVIEWS 13: 188 – 194 (2007)

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Lloyd-Sherlock, 2000]. Much has beenwritten about how baby boomers willskew age distributions in the UnitedStates, impacting health care and everyother age-sensitive system [Fujiura,2000]. While the impact of aging onacquired disabilities is straightforwardand predictable [Freedman et al., 2002],a number of issues specific to intellec-tual disabilities are linked directly toaging. The reviews in this issue by Hel-ler et al. [2007] and Turnbull [2007]succinctly present the core challenges:developing appropriate service and caremodels, managing health, and securingand organizing public financing. Yetaging indirectly influences multipleother policy dynamics relevant to theintellectual disabilities field. We considertwo issues that are the focus of consid-erable concern in the general aging lit-erature but have yet to receive muchattention in intellectual disability policydialogue: changes in the labor marketand immigration.

Changing Labor MarketsAdequate staffing of social and

health systems is a universal concernacross disability constituencies and sys-tems of social care, and most promi-nently in elderly services care [Stoneand Wiener, 2001; Wunderlich andKohler, 2001; U.S. Department ofLabor, 2002]. The impact of aging onlabor market shortages is a matter ofdebate. A number of projections pointto significant and widely reported laborshortages [Employment Policy Founda-tion, 2001; Hodge, 2004] while otheranalysts predict a market in approximateequilibrium and argue that shortfallswill be attenuated by increased multiplejob holders, immigration, and industriesmanaging human resources in responseto labor shortages [Horrigan, 2004].Virtually all analysts agree that thestructure of the labor market willundergo significant alterations over thecoming decades as a consequence of anaging population: occupational short-ages will occur in fields where olderworkers are disproportionately repre-sented and in occupations with growinglabor demand because of populationaging [Flemming et al., 2003]. Occupa-tional demand projections by the U.S.Bureau of Labor Statistics [2006]through 2014 shed insight into thecharacter of the relationship betweenaging demographics and labor marketdynamics. Health care and social serv-ices are projected to grow faster thanany other major employment category,driven primarily by increased demand

for assistance and supports by the grow-ing elderly population. The importanceof human service support professions inthe projections is notable; home healthaides, social and human service assis-tants, physical and occupational therapyassistants, and related occupations ac-counted for the majority of the 20 fast-est growing occupations [U.S. Bureauof Labor Statistics, 2006].

What is the significance of theselabor projections to the intellectual dis-abilities field? Hewitt and Larson’s[2007] review underscored the long his-tory of staffing issues plaguing serviceprovision in the field. To date however,the policy challenge has typically beenframed in terms of quality [Mansell andElliott, 2001], recruitment [Larsonet al., 1999] and turnover [Mitchell andBraddock, 1993]. If current projectionshold true because of spiraling demandfor labor required by the expansion ofelderly care support systems, the intel-lectual disabilities field will likely beconfronted with unprecedented laborshortages.

The need for a decisive policyresponse to the growing demand forlabor within the intellectual disabilitiesservice system will also be exacerbated bythe aging of adults with intellectual dis-abilities. Due to the technological andhealth care advances realized during thelast century, the first generation of U.S.adults with intellectual disabilities is be-ginning to outlive their parent caregiversin large numbers. In their current config-urations, service systems are ill equippedto handle the increased numbers of el-derly people with intellectual disabilitieswho will require care from an increas-ingly strained service system, demandinggreater levels of labor for their own serv-ice needs in direct competition with theelderly care service systems [Parish andLutwick, 2005].

Immigration and LaborThe great unknown in these fore-

casts is how immigration will influence

both the demography of aging and pro-jected labor market shortages over thenext few decades [Borjas, 2003; Hirsch-man, 2006]. While illegal immigrationdominates the policy discourse, it is thesheer magnitude of legal immigrationthat has altered the U.S. landscape Duringthe 1990s the U.S. population increasedby *26 million; 70% of that populationgrowth��18 million persons��was im-migrants or their children [U.S. CensusBureau, 2004]. Rates have continued toincrease through the current decade[Shrestha, 2006].

This influx directly influenced em-ployment and looms large in forecastingshortages, particularly in the health anddisability support professions. Immi-grants accounted for nearly 50% of U.S.labor force growth between 1996 and2000, and comprised *15% of the totallabor force in 2004 [Mosisa, 2006].While the public face of immigrationpolicy is most often framed in terms ofexcluding undocumented workers, thefact of immigration, legal and other-wise, is critical to the economies ofhigh skill industries [Lowell, 2004],service industries dependent on entrylevel wages, such as the hotel and resortindustry, [Bergsman, 2002] and thehealth care sector [Yamada, 2002]. Legalimmigration is driven largely by eco-nomic considerations and we shouldexpect enormous pressures to expandimmigration from affected industries[Cornelius and Rosenblum, 2005].International studies of population agingsuggest access to a younger immigrantworkforce represents a significant com-petitive advantage for the United Statesover the economies of Europe and Ja-pan, whose populations are aging at aneven faster rate [National IntelligenceCouncil, 2000].

The link between the intellectualdisabilities field and immigration ismore nuanced than the balance of sup-ply and demand for low wage workers.How will a system of disability servicesthat is deeply influenced by socialnorms respond to immigration, with itsattendant mixing of cultures? Anobvious example is Latinos’ displace-ment of African Americans as the larg-est U.S. minority group [U.S. CensusBureau, 2006b], a transformation Rodri-guez [2003] has termed the ‘‘browning’’of America. He has argued that whileU.S. culture has always existed at theconfluence of heterogeneous racial, eth-nic, and cultural traditions, the brown-ing of America is evident in the emerg-ing centrality of Latin American culturalinfluences in the United States. Perhaps

It is not simply a matterof linear extrapolationsto the future, but ratheranticipating the forcesthat may shape future

circumstances.

MRDD Research Reviews DOI 10.1002/mrdd � EMERGING POLICY ISSUES � FUJIURA AND PARISH 189

the transcendent issue, and one inextri-cably linked to immigration policy andincreasing racial diversity in the UnitedStates, is the need to develop a stableand committed workforce, a goal notlikely to be facilitated by framing theseissues exclusively in terms of low-income labor.

SOCIAL TRENDSThe distinction drawn between

population and ‘‘social’’ trends is admit-tedly arbitrary, but their separationserves to shift the focus to issues morefrequently represented in domestic pol-icy evaluations. We selected three socialtrends based on the breadth of theirpotential impact on the intellectual dis-abilities field: families and poverty, gov-ernance, and the interface of technologyand culture.

Families and PovertyThe family as a central policy

concern has been addressed in detailelsewhere in this issue [Heller et al.,2007; Turnbull et al., in press]. Theimportance of the family to policy plan-ning is related to the structure of care-giving in the United States: the major-ity of Americans with intellectual dis-abilities live at home with a familycaregiver, most often a parent or parents[Fujiura, 1998]. The impact of agingcaregivers is the most prominent of theseconcerns [Fujiura and Braddock, 1992],and briefly reviewed elsewhere in thisissue [Braddock, 2007; Heller et al., 2007].The size of the cohort suggests significantand as yet unrealized near-term demandson support systems as family caregiversage while significant demand for servicesremains unmet across the states.

In the present analysis, we expandon the family theme by focusing ontransformations, still unfolding, in thestructure of American families. Theidealized notion of the nuclear familyhas been widely critiqued as a myth ofthe postwar era; families have neverbeen a ‘‘fixed form’’ and are alwaysevolving in response to cultural, eco-nomic, and other forces [Hernandez,2003]. Nonetheless, there is little ques-tion that the structure of the Americanfamily has undergone radical transfor-mations during the past generation. Thecentrality of marriage to family forma-tion has been profoundly affected byrising divorce [Gruber, 2004], cohabita-tion [Bumpass, 1990], and nonmaritalchildbearing [Smeeding et al., 2004],which has occurred as intergenerational

family households have declined [Silver-stein and Bengtson, 1997].

The increased labor force partici-pation of American women directlyaffected their traditional caregiving rolesand influenced the declining size of fam-ilies [Hooyman and Gonyea, 1995], withindirect albeit important implications forthe intellectual disabilities service system.Most caregivers of people with disabili-ties��both adults and children��arewomen, but women’s caregiving rolesoften conflict with their responsibilitiesas workers [Parish et al., 2004; Parish,2006]. Women’s employment reducestheir availability to serve as caregivers,and will likely increase pressure on theformal service system to support greaternumbers of people with intellectual dis-abilities. Furthermore, family size hasdeclined as women’s employment rateshave increased. These smaller familiessubsequently have fewer children whoultimately have less capacity to care fortheir siblings with disabilities when theirparents are unable to continue caring.This dynamic will increase pressure onthe formal service system in the future[Parish and Lutwick, 2005].

The connection between povertyand family structure and recent povertytrends in the United States are of specialinterest to our projections. Though theconnection between disability and pov-erty is an old story, there are two fea-tures of special relevance to family pol-icy. The number of children living inpoverty has been increasing in theUnited States since 2000 [National Cen-ter for Children in Poverty, 2006], andthe absolute numbers are large [20.6 mil-lion low income children 18 years oryounger in 2005; U.S. Census Bureau,2006a]. Furthermore, income inequalityhas sharply increased��the nation’s totalearned income has become more con-centrated into a smaller number of house-holds since the late 1960s [DeNavas-Waltet al., 2006]. This rise in income in-equality is in part linked to the growthof one-parent families, particularly amongminorities [Lerman, 1996; Lichter, 1997].Similar patterns are found among disabil-ity households [Fujiura et al., 1998] withextraordinary rates of poverty amongsingle parent, primarily female-headedhouseholds (an average of 64% across allgroups; 79% for single parent Latinofamilies).

These exorbitant poverty ratesamong households headed by womenand increased income poverty trends areof particular concern. Poverty-exposedchildren with intellectual disabilitiesappear to be at elevated risk for adverse

outcomes as contrasted with their typi-cally developing peers [Park et al.,2002]. Welfare policies that once ex-empted single mothers of children withdisabilities from work requirementswere repealed with the enactment ofTANF in 1996, and the recently passedDeficit Reduction Act further increasedthe amount of work required by welfarerecipients [Parrott et al., 2006]. Yet thelimited existing evidence suggests thequality of child care available to poorand low-income children with disabil-ities is likely inadequate when comparedwith that used by nondisabled children[Parish and Lutwick, 2005]. Despitecontinued work requirements for low-income mothers, states have cut childcare funding for the last 2 years [Mat-thews and Ewen, 2006]. The child caresupports necessary for mothers’ laborforce participation appear insufficient,particularly for mothers raising childrenwith disabilities.

We know very little about thescope and status of immigration andpeople with disabilities [Mautino,2002a,b] and how it may affect the dis-ability-poverty relationship. Researchon the health of immigrant commun-ities suggests a ‘‘healthy immigrant para-dox’’��though typically poorer, as apopulation they and their children arerelatively healthy [Morales et al., 2002].A number of hypotheses have been putforward: (1) cultural mediators protectagainst the risks of poverty [Beiseret al., 2002]; (2) regulatory biases of theimmigration process limit the influx ofindividuals with impairments [Mautino,2002b]; (3) selection biases are imposedby the difficulty of the immigrationprocess [Franzini et al., 2001]; and (4)the more prosaic effect of undersam-pling [Palloni and Morenoff, 2001].The limited existing data suggest thehealthy immigrant paradox trends holdfor disability in the United States: ratesfor activity limitations are substantiallylower for immigrants across all agecohorts [Benjamin et al., 2000]. Yet,exposure to poverty among children ofimmigrants is significantly higher thanfor the native born population��36%versus 11% in 2000 [Douglas-Hall andKoball, 2006]. Though relative risk ratesremain favorable for first generationfamilies, the paradox effect has consis-tently been found to diminish as accul-turation increases [Flores and Brotanek,2005]. Given the strong covariation ofpoverty status and risk for intellectualdisabilities in the epidemiological litera-ture [Emerson, 2007], crossgenerationalexposure to poverty and its collateral

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risks suggest external pressures of un-known long-term impact.

Family looms large in Americanpoverty policy: debates over the properrole of government in encouragingfamily stability and structure have beena recent and controversial approachwith both proponents and critics [Feinand Ooms, 2006]. Promoting marriageand reducing nonmarital childbearingwas an explicit focus of the 1996 wel-fare legislation, and represents a water-shed of sorts. It was the first time fed-eral policy explicitly sought to influencefamily formation, albeit with limitedeffect��states did not emphasize theseprograms in their welfare programs[Fein and Ooms, 2006]. While federalrevenues are still earmarked for theseefforts, the evidence suggests their im-pact (like the level of allocated resources)will continue to be limited over the nearterm.

What does the future hold forfamily policy as it relates to poverty? AsTurnbull [2007] notes, ‘‘There is no sin-gle family policy in the field of devel-opmental disabilities’’. Rather, a set ofcore concepts are addressed via diversedisability-specific or generic policies[Turnbull, 2007; Turnbull et al., inpress] that are not complementary[Turnbull et al., 2001]. The trends sug-gest a bifurcation of families into twogroups: the conventional target of fam-ily supports and those of extreme pov-erty and vulnerability not traditionallyserved by the intellectual disabilitiesservice system. Our analysis convergeson Folbre’s [2001] characterization offamily policy as economic policy��sheargues and we concur that families mustbe approached in a comprehensive fash-ion with the goal of allowing membersto care for each other. Family policy isminimum-wage policy, child care sup-ports, health policy, and taxation policy.Family policy is family and povertypolicy.

GovernanceIn April of 2001 the National Dis-

abled Students Union (NDSU) organizedmarches across the nation to protest theSupreme Court’s Board of Trustees ofthe University of Alabama v Garrett[2001] decision. The core of the Court’sdecision rested on the Eleventh Amend-ment’s prohibition against equal protec-tion suits brought against states by privatecitizens [Cahill and Malloy, 2004]. Alapel button distributed by the NDSUproclaimed, ‘‘civil rights before statesrights.’’ The Garrett ruling is part of alarger Court trend restricting federal

authority over interstate commerce,states’ implementation of federal pro-grams, and enforcement of the equalprotection clause of the FourteenthAmendment [Parmet, 2002]. The NDSUlapel button expressed the underlyinganxiety about the impact of the new fed-eralism: Garrett was viewed as an omi-nous extension of the precedence of statesovereignty over federally defined ‘‘rights’’[Cahill and Malloy, 2004].

Federalism accentuates the devel-opment of differences across states whilethe thrust of disability advocacy andpolicy has been to secure uniform,national protections. Publicly-fundedsupport of persons with intellectual dis-abilities has historically been the prov-ince of state government [Braddock,2007]. The structure of intellectual dis-ability services reflects this fact of feder-alism: the most notable feature of serv-ice systems is how variable states are intheir fiscal commitments and in thecharacter and quality of services. Willthe new federalism lead to a retrench-ment by some states in their commit-ment to their citizens with intellectualdisabilities? Recent examples are in-structive. Florida is modifying its healthcare system for the poor and peoplewith disabilities through a waiver elimi-nating its traditional ‘‘defined benefit’’Medicaid program, replaced with a‘‘defined contribution’’ Medicaid pro-gram. Florida is venturing intouncharted Medicaid territory, offeringservices based largely on cost, not typeor need. This is particularly alarmingfor people with intellectual disabilitiesbecause troubling disparities currentlyexist in the health care of people withintellectual disabilities [e.g., Parish andSavile, 2006; Krahn and Drum, 2007];cost-based allocations may result inrationed services and further exacerbatesuch disparities. A more positive devel-opment is illustrated in Massachusetts’enactment of universal health insurancein 2006. The coverage will be achievedby a combination of expanding Medic-aid, subsidizing private insurers for cov-erage of high risk individuals, compel-ling people who can afford coverage topurchase it, and other measures [Exe-cutive Department, 2006]. Given thelong-standing barriers to employmentthat health insurance poses for manypeople with disabilities and parents ofchildren with disabilities, Massachusetts’new approach may signal improvedwell-being for families affected by dis-ability. These and other experimentsunderway across the states suggest thatthe evolution of the ‘‘new’’ federalism

must be seen in gradations of grayrather than dichotomies.

Complex problems will requirenuanced solutions; neither blunt applica-tion of centrist principles or rapid devo-lution of powers to localities will likelyemerge as a realistic option [Parmet,2001]. The essential message of the dis-cussion of federalism and federal man-dates is that the push and pull of sover-eignty is a natural tension of the U.S. sys-tem of governance. What is most likelyis a continuation of governance trendsthat extend nearly back to the country’sfounding: state experimentation withpolicy initiatives, working within broadfederal guidelines. Federalism has ex-pressed itself cyclically throughout U.S.history [Nathan, 2005]. Medicaid fund-ing appears to be following this patternand as federal deficits and states’ fiscalhealth vary over time we should expectan ongoing tension in the federal profilein supporting disability services, whichwill likely be challenged under the ban-ner of federalism. Indeed, the new feder-alism was stimulated in part by the esca-lating costs of Medicaid mandates for thepoor; Medicaid, including the disabilityWaiver program, was caught in the back-lash and nearly converted to a blockgrant in the mid-1990s [Braddock et al.,2002]. In turn, states have resisted effortsto severely restrict growth in the Medic-aid program [Holahan et al., 2002;Nathan, 2005]. However, states’ capabil-ity to greatly expand their existing serv-ices is unlikely to manifest itself in thenear future and the fundamental impor-tance of federal resources to the intellec-tual disability policy agenda will con-tinue. Critical unknowns are whetherfederal leaders have the will to expandthis role, whether alternative models forstate and federal partnerships will emergefrom states’ current Medicaid Waiverexperimentation, and perhaps most crit-ically, and the adequacy of federal resour-ces. The federal debt was at a recordhigh in 2006, driven largely by recenttax cuts and increased defense spending[Congressional Budget Office, 2006].Current federal outlays to finance thedebt totaled $184 billion in 2005, andexceeded federal spending for a host ofdomestic priorities, including Medicaid($181 billion) Supplemental SecurityIncome ($37 billion) and the Children’sHealth Insurance Program ($5 billion)[Congressional Budget Office, 2006].While there is no consensus about thepotential impact of the federal debt ondomestic spending, Medicaid spendingwas reduced in the February 2006 Defi-cit Reduction Act, signaling the strong


possibility of future federal budget cuts iftax reductions and increased defensespending are maintained.

CultureOur discussion of cultural trends

is approached from the perspective oftechnology; a pairing that may initiallyseem odd. The juxtaposition is crucialhowever; the synergy in our culturalunderstandings of humanity shape boththe direction and goals of technologyjust as technology can fundamentallyshape our notions of what it means tobe human.

A concise discussion of technol-ogy trends at any level of specificity isbeyond the scope of this review becausethe area is vast, dynamic, and inherentlycomplex. Discerning underlying themesis a more manageable challenge. TheNational Science Foundation (NSF)explored this general idea of technolog-ical themes in their analysis of theemergence of nanotechnologies fromthe convergence of advances in biology,information sciences, and cognition[Roco and Bainbridge, 2003]. Our cul-tural analysis emerges from the corethemes of the NSF analysis, whichfocused on how converging technolo-gies can be applied to ‘‘improvements’’in human cognition, health and physicalcapabilities, and social interactions.Most of the anticipated impacts are fa-miliar to the disability field and comein the form of environmental modifica-tions, personal assistive technologies,new medicines and foods. These areobvious extensions of our history withtechnological innovations��to expandour control over our environment. Itwas the NSF’s fifth category of applica-tions��those that were permanent andinternal��that require additional reflec-tion by both the disability and ‘‘humanperformance’’ communities. We haveuntil now thought of technology interms of its potential to assist, but tech-nology convergence suggests assistanceis only one, perhaps minor, implicationof today’s technology. Extending tech-nological applications into permanentand internal modifications of humansis unequivocally a movement towards‘‘supplantive’’ rather than assistive tech-nologies [Roco, 2004]. What is the sig-nificance of this trend for the intellec-tual disabilities field?

Here we steal a page from ourhumanities colleagues in the field of dis-ability studies, who use cultural referen-ces to help illuminate the contemporarydisability dialogue [Thomson, 1997].The use of physical or intellectual dif-

ferences to symbolize deviance fromcultural or political norms is typical ofartistic representations of impairmentacross history��disablement serves as ametaphor for suffering or some otherextreme of the human condition. Intechnology as in art, deviations fromthe norm can be portrayed as a defector a medical problem��an object inneed of repair. In Bruegel’s 16th cen-tury painting ‘‘the Beggars’’ for example,the physical anomalies of the centralcharacters have been interpreted as asymbolic reference to moral failure[Walsh, 1998]. The biochemist GregorWolbring critiqued the NSF conver-gence report, noting that the connec-tion of technology to disability was onlyin terms of ‘‘fixing’’ impairments, elimi-nating diseases, or preventing theappearance of ‘‘defects’’ [Wolbring andGolledge, 2003]. The approach stands

in stark contrast to emerging concep-tions of disability that frame limitationsprimarily as socially or environmentallycreated [Altman, 2001]. The distinctionis critically important. Wolbring andGolledge [2003] note that while thesenew conceptions of disablement do notdeny the ‘‘biological reality’’ of impair-ment, they demand a reconsideration ofconceptions of normality. The shift inemphasis away from individual attributesforce attention on our cultural and po-litical responses to them.

We return then to conundrumsraised in the Munger et al. [2007]review of the Human Genome Project.Technology is a fundamental force inmodern life, but the truly dramaticchanges have yet to occur. How theworld of intellectual disabilities navigatesthese changes is profoundly important.The cautionary notes from emerging

disability paradigms is not an antitech-nology or antiscience perspective, butrather as Wolbring [2002] suggested, abroader view on the use of medicaltechnologies ‘‘quite apart from theirapparent objective utility’’ (p. 213).There are no answers yet but rather aseries of moral dilemmas. How theseare resolved will tell us much about thefuture of intellectual disability in society.What is not normal? What needs to befixed? What needs to be prevented?

SUMMARYWhat the future holds for intel-

lectual disability policy is of courseunknown. Our projections have beendrawn in only the broadest of strokes;there are most certainly omissions ofemerging trends that will be equallycritical to the evolution of disabilitypolicy. Our caveat is to treat this sum-mary as a cautionary note rather than asportent of the future. The act of fore-casting is useful not for the predictions,but rather in forcing awareness offutures not necessarily bound by what isfamiliar. The central theme of our anal-ysis is that intellectual disability policyoccurs in the context of larger forces;for the intellectual disability field themessage is that we must challenge our-selves to look beyond our sometimesinsular concerns to better understandthe challenges before us. n

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Emerging policy challenges in intellectual disabilities