inclusion through care: an analysis of how long-term care policies can promote social inclusion for...

8/12/2019 Inclusion Through Care: An Analysis of How Long-Term Care Policies Can Promote Social Inclusion for People With

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INCLUSION THROUGH CAREAN ANALYSIS OF HOW LONG-TERM CARE POLICIES CAN PROMOTE SOCIAL INCLUSION FOR

PEOPLE WITH DISABILITIES

Audrey StienonRoosevelt House Public Policy Institute at Hunter College

Public Policy Capstone

December 4, 2013


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Table of Contents

Executive Summary !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

Disability, Inclusion, and Care !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!#

The Importance of Long-Term Care for the Disabled !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!#Stakeholders of Long-Term Care Policies !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! $

Defining Disability !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!$The Medical Model!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! %The Social Model!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! %The Capabilities Framework!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! %Intersecting the Models !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! &

Policy Trends of Long-Term Disability Care !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!&Trend #1: Segregation and Institutionalization !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! &Trend #2: Deinstitutionalization !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! '

Deinstitutionalization of the Mentally Ill **************************************************************************************************+

Deinstitutionalization in New York********************************************************************************************************* ),Trend #3: Home and Community Based Care (HCBC) !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!((Trend #4: Rights Based Policy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!("

A New Focus for Future Policy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ("Promoting Health !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!()Promoting Social Integration !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!()

Spectrum of Care !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (#Institutions and Nursing Homes Care Apart From Society!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!(#Home and Community Based Care The System As We Are Now Building It !!!!!!!!!!!!!!!!!(*Integration !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!($

Case Study: Independence Care Systems !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ($

Policy Recommendations !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (&

Conclusion !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ('

Bibliography !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! "+


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Executive Summary

People with disabilities are unable to participate fully in our society. Demographically

speaking, the disabled are poorer, less healthy, less educated, less employed and lesspaid.1Several laws exist protecting their right to be fully included in society, and yet ourpolicies for long-term care perpetuate their segregation. This paper will discuss ways inwhich policies can be used to care for the disabled while allowing for and encouragingtheir full participation in society.

There are two basic definitions of disability. The medical model describes disability asbeing caused by a persons impairment, and therefore recommends policies to offertreatment for these impairments. The social model defines disability as being caused by aset of social barriers that put people with impairments at a disadvantage, and thereforerecommends policies to remove or these social barriers. The capabilities framework,

developed by Amartya Sen, offers a way to reconcile these two models, by measuringequality based on peoples capabilities to achieve certain end goals.2 Policies should

consider the intersection of these models of disability when considering ways to integratethe disabled into society.

People with disabilities began to be explicitly segregated from society during theindustrial revolution, when they began to be placed into institutions. In the 1960s,disability rights organizations began to advocate for the right of all individuals toparticipate in society a movement that spurred a deinstitutionalization movement acrossthe country. Unfortunately, the poorly coordinated deinstitutionalization movement forthe mentally ill demonstrates the risks of closing institutions without ensuring that

communities have the proper resources to care for the medical needs of those leavingthese institutions. Home and community based care services offer an alternative toinstitutions that allow the disabled to engage with society, and yet many of these careproviders continue to solely emphasize the medical needs of their clients. In other parts ofthe world, rights based policies are being used to ensure that social barriers to theinclusion of people with disabilities are removed.

When comparing alternative methods for providing long-term care for people withdisabilities, policymakers must consider how well they address the issues raised by bothmodels of disability, and must consider how well they promote both health and socialinclusion.

Alternative policies for providing care can also be compared on a spectrum that measureshow much each allows for integration in society. At one end of this spectrum lieinstitutions, which promote full segregation. These might make the provision of medicalcare easier, but they are difficult to hold accountable, and prevent people with disabilities

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from engaging with society. At the other end of the spectrum lie community-basedpolicies that also combat social barriers to people with disabilities, and which promotefull integration. These latter policies, although theoretical, would require a shift in thedefault assumptions behind current care policies, and would require the greatest amountof flexibility from care providers. However, these policies would hold the greatest benefit

for people with disabilities. The community-based care policies that currently exist makeup the middle of the spectrum, given that they allow for more community participationthat do institutions, but they still focus on providing for medical needs, rather than alsocombating social barriers.

Independence Care Systems is a care coordinator in New York City that serves as a goodcase-study for how an organization can simultaneously meet the medical needs of itsmembers, while helping them to integrate themselves into society. The organization goesbeyond the medically-focused services provided by Medicaid, and offers its members thechance to live in and engage with communities. Furthermore, they work with serviceproviders to ensure that people with disabilities have access the same services as other

people do.

The ultimate, long-term goal of all policies should be to promote an integrated society inwhich individual capabilities are equalized between disabled and non-disabledindividuals. Policymakers should consider such initiatives as:

Changing the assumed purpose of care to also consider the promotion of socialinclusion as part of its mandate

Increasing access to care coordinators Providing support for family members who act as caretakers for individuals with

disabilities

Providing access to care coordinators for individuals with intellectual ordevelopmental disabilities

Increasing dialogue with disabled peoples organizations Forming partnerships with care providers in order to promote socially-inclusive

practices

Promoting disability sensitivity training Mainstreaming disability policy


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Disability, Inclusion, and CareAlthough several laws exist guaranteeing people with disabilities the right to be includedin society, the methods with which they are provided with long-term care continue to

perpetuate their segregation from the general population. This paper will discuss ways inwhich policies can be used to care for the disabled while allowing for and encouragingtheir full participation in society.

The Importance of Long-Term Care for the Disabled

According to the US Census Bureau, in 2010,approximately 18.7 percent of the civilian, non-institutionalized US population had a disability.3This constitutes a larger percentage of the

population than individuals over the age of 65,even though the growth of the later group is moreoften cited as a cause of rising healthcare costs.4

Long-term care is expensive in and of itself, and itconstitutes 31.5 percent of Medicaidsexpenditures nation-wide.5Nevertheless, althoughpeople with disabilities often require similarservices to the elderly, they usually require greaterresources for a longer portion of their lives thando other Medicaid recipients; in 2010, 42 percent,

or over $21 billion of New Yorks Medicaidpayments were made to people with disabilities,whereas only 27 percent went to the elderly, and19 percent went to other adults.6 Furthermore,given that disability prevalence increases withage, the costs of disability care are likely to rise asthe Baby Boomer generation grows older.7 If thestate government is to consider new ways inwhich to reduce spending on healthcare, then itmust consider new strategies to provide care to itsdisabled population.8

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People with disabilities face multiple barriers preventing them from participating insociety as easily as people without disabilities; People with disabilities are more likely tobe unemployed, more likely to earn lower wages, and more likely to live in poverty.9Disability in New York is also more prevalent among racial and ethnic minority groups,as well as in less educated populations. This means that their concerns overlap with those

of many other underserved minority groups, and that care policies must consider ways toconsider the social barriers that these individuals would have to face regardless of theirdisability, and must simultaneously serve the needs of these communities.

The demographics of disability are also changing, and new care policies will have toreflect these shifts. There have been increasing efforts around the country to transitionpeople in need of long-term care, such as the developmentally disabled, out of institutionsand nursing homes, and back into their communities. However, it is unclear whethercommunities have the resources necessary to provide these people with the constant careservices that they need.

Furthermore, over 25 percent of the primary caretakers of persons with developmentaldisabilities, a large majority of whom still live with their family members, are over theage of 65.10Given that modern medical advances make it increasingly likely that peoplewith disabilities will live past the age of 60, their current caretakers are unlikely to beable to assist these disabled individuals throughout the full duration of their lives. 11Thestate must therefore simultaneously ensure that proper care is provided to those who areexiting institutions, as well as to those who are living with family members who will nolonger be able to provide them with constant care. Furthermore, care providers will needto increasingly focus on treating ailments that develop as individuals age, and that aremade more likely because of their previous disability; higher rates of survival must alsobe matched with a better quality of life.12

Nevertheless, it will not suffice to simply expand the existing care system, given thatadults with disabilities in New York State, are likely to report that their coverage isinadequate.

13 The 2007 New York State Behavioral Risk Factor Surveillance System

survey found that adults with disabilities are generally more likely than the rest of thepopulation to have chronic health conditions, more likely to have had not exercised theprevious month, more likely to rate their health status as fair or poor, less likely to get

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sufficient social and emotional support, and less likely to be satisfied with life.14

Ultimately, the long-term care given to individuals with disabilities has large implicationson how easily they are able to live autonomously and independently, and therefore shouldbe seen as the foundation of how people with disabilities are integrated into society.

Stakeholders of Long-Term Care PoliciesPeople with disabilities are the primary stakeholders in policies designed to provide themwith care. They are the group with the best understanding of their own needs, and willhave to rely on these policies to meet their medical needs, and to help them integratethemselves into society. It should be noted that people with disabilities vary in their needsand capabilities, and so they each favor a different combination of policies and careoptions.

Caretakers and care providers are another important group to consider in these policies.Those who were formerly employed in institutions tend to be opposed to thedeinstitutionalization movement, as are care providers who do not want to deal with theextra costs of providing accessible services to the disabled. Managed care organizations,on the other hand, are being contracted by Medicaid to help provide care services, and sobenefit directly from a shift to community-based care services. Similarly, care providerswith a more rights-based orientation are also more in favor of deinstitutionalization.

Families of people with disabilities, and especially of people with intellectual ordevelopmental disabilities, often take on the responsibility of providing care wheninstitutions are not available. They are interested in seeing adequate resources beingprovided to communities, so that they do not suffer undue costs from this role.

Although discussions of disability polices are not often brought to the attention of thegeneral public, policies that promote social integration will indirectly affect everyone insociety, and might require that certain groups make accommodations in order to increaseaccessibility for people with disabilities. While they will not engage in the debate of howto design new policies, people in the public will oppose policies if they are poorlymanaged, or if they force them to take on extra costs.

Defining Disability

Disability with respect to an individual is defined by the American Disabilities Act(ADA) as a physical or mental impairment that substantially limits one or more majorlife activities of such individual; record of such an impairment; or being regarded ashaving such an impairment.15

Beyond this strictly legal definition, however, there remain two main models that

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contextualize disability, and demonstrate the different paradigms within which disabilitypolicies are created.

The Medical ModelThe medical model of disability defines disability as a problem located within anindividual that prevents them for leading a normal life. In effect, this model looks at anindividuals medically defined impairment be it any physical or mental loss of function and attributes to it responsibility for this persons inability to participate fully insociety. People in a wheelchair are disabled because they cannot walk, and thereforecannot climb steps, or reach certain spaces. The blind are disabled because they cannotsee, and therefore cannot read.

Policies based on the medical model focus on ways to either cure an individualsimpairment, or otherwise provide a treatment for their impairment. This approach impliesthat, in order to participate in society, people with disabilities must be altered so that theymore closely resemble people who are deemed to be fully functional. Long-term carepolicies based on this model are designed to effectively and efficiently meet the medicalneeds of the disabled, and emphasize the provision of corrections (such as hearing aids),mobility aids, assistive technology, and rehabilitation.16 It should be noted that this hasbeen the predominant model throughout most of our history, and that opposition to thismodel has only appeared recently.

The Social ModelThe social model of disability defines disability as situation caused by exclusionarysocietal barriers, which puts individuals with an impairment at a disadvantage. Accordingto this model, people are disabled because society does not accommodate their physicalor mental differences, causing them to be excluded from daily social activities. People inwheelchairs are disabled because there are no ramps or elevators to allow them to reach

certain areas; the blind are disabled because texts are not provided in a Braille format.

Policies stemming from this model focus on the rights of people with disabilities to beincluded as equals in society, and work to limit the social barriers facing the disabled. Incontrast to the medical model, disability is no longer seen as the intrinsic problem of theindividual, and it is a matter of social justice that social barriers be removed.17

The Capabilities FrameworkAlthough not a model that deals exclusively with disability, the capabilities frameworkprovides an alternative description complimentary to the social model of howindividual disadvantages stem from social or economic barriers.18 According to this

framework, an individuals wellbeing should be measured using their capability toparticipate in a range of activities, and inequality between people should be measured bylooking at when the environments around individuals limit their capabilities,

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opportunities, or choices.19

If we are to discuss disability using this framework, then we must assume that peoplewith disabilities should, in an ideal and perfectly equal society, have the same capabilitiesor opportunities as non-disabled individuals. This does not mean that everyone should be

defined by their ability to partake in the same activities, but rather that people shouldhave the ability and freedom to engage in those that they wish to. Liberation fromdisability is about having choices, not about living life in conformity to some pre-definednotion of normality.20

This framework is important in terms of disability policy because it defines equalitythrough peoples ability to participate in certain activities, without differentiatingbetween the different ways in which people participate. This means that three individualscould be considered equally capable of communicating, even if one were speaking, thesecond were using sign language, and the third using assistive technology; the end actionis all that matters. If we accept the social models premise that people are disabled by

societys inability to accommodate their impairments, then the capabilities frameworksuggests that policies should focus on expanding the different ways in which people canremain active in society, regardless of these impairments.

Intersecting the ModelsSuccessful policies for providing long-term care to the disabled must take these modelsinto account, since each of them describe a different perspective of how the disabled areexcluded from society. The medical model recognizes that people with disabilities haveintrinsic medical needs that must be dealt with if they are to participate in society, and itrecognizes that there is much that science and technology can do to help individualsovercome the limits of their impairments. However, the social model adds nuance to thismindset, by explaining how social factors also limit people with disabilities, and how

policies can be used to mitigate these external barriers. Finally, the capabilitiesframework provides a paradigm in which both of these models can work to increase thecapabilities of people with disabilities to engage with society.

Policy Trends of Long-Term Disability Care

The development of different models to describe disability has mirrored shifts in thepolicies used to provide care to people with disabilities. If we look at the history of howthe United States and other Western countries have chosen to care for the disabled, wecan see four general trends in policy that allow for different balances between thedisability models.

Trend #1: Segregation and InstitutionalizationPeople with disabilities were never highly regarded in society, and yet they were often

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allowed to contribute to the agricultural economy of pre-industrial Europe.21In 1601, theBritish Poor Law began to push people who were unable to earn a living for themselvesinto institutions a move which was exacerbated as the Industrial Revolution placed anemphasis on a factory system wherein wages depended on a workers ability to completetasks in given amounts of time.22The disabled quickly got excluded from the labor force,

and were labeled as being the undeserving poor.

23

Meanwhile, the asylum movementattempted to place people with mental health problems into therapeutic environments,thereby segregating them from society.24 By the eighteenth and nineteenth century,people with disabilities were living within institutional settings, ranging from asylums,hospitals, workhouses and prisons.25 From the perspective of society, these institutionswere viewed as efficient ways to watch over and care for the disabled, while keepingthem out of the way from the general population.

Trend #2: DeinstitutionalizationA disability-rights movement began to emerge in the United States in the 1960s, andbegan to push back against institutions. In tandem with the Civil Rights and womensmovement, the disability-rights movement advocated for the right to be allowed to livewith and participate in society. Institutions were increasingly seen as inhumane, andconflicting with individuals right to autonomy over their lives. These arguments werefacilitated by advances in medical technology that allowed disabled individuals to receivemedical treatment in community settings.

Slowly, state and federal laws were changed to reflect these new expectations. With the1981 Omnibus Reconciliation Act (OBRA), Congress allowed the federal government togrant waivers to those using Medicaid who wish to receive home and community basedcare; this marked an important shift in Medicaid policy, which had previously onlyoffered long-term services coverage for those entering institutional settings.26New YorkState was unique in this regard, given that in 1977 it had already enacted its Long Term

Home Health Care Program (LTHHCP), after which the federal law was designed.27 In1999, the Supreme Court ruled in Olmstead v. LC that unnecessary institutionalizationviolated the 1990 Americans with Disabilities Act (ADA), and therefore required thatstates ensure that persons with disabilities receive services in the most integrated settingappropriate to their needs.

28

Deinstitutionalization of the Mentally Ill

The dangers of poorly managed deinstitutionalization policies can clearly be seen in the

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aftermath of the widespread closure of state institutions for the mentally ill.

The movement away from mental health institutions began as states funded smallcommunity programs for individuals who could be treated by the new anti-psychoticmedications that were being developed.29 In 1963, President Kennedy passed the

community mental health act, which aimed to build community-based mental healthcenters that would allow people with mental illness to receive treatment while living athome.30 Similarly to the disability-rights groups, the mental health community arguedthat deinstitutionalization would allow individuals to live higher quality and moreautonomous lives, and therefore welcomed this legislation. President CartersCommission on Mental Health even lauded the "the objective of maintaining the greatestdegree of freedom, self-determination, autonomy, dignity, and integrity of body, mind,and spirit for the individual while he or she participates in treatment or receivesservices."31

Unfortunately, even while there was a push to move people out of state public mental

hospitals, little was done to prepare communities to receive them. Only about half of thecommunity centers proposed under Kennedy were even built, and those that existed wereoften understaffed and short on resources.32While certain individuals did experience theincrease in autonomy that the policy had promised, many others finding themselveswithout access to their medications or medical services found themselves eitherhomeless, or, in the long run, in prisons.33

Policymakers now have a greater understanding of how to properly design community-based care programs, but the lessons learned from the mental health communitysdeinstitutionalization movement cannot be forgotten. Although community care mightpromise to be more cost-effective for states, policymakers must still ensure that adequateresource are provided to communities to meet the need of the people who live there, aswell as to make certain that these resources are easily accessible for those that need them.Failure to do either of these things can result in individuals slipping through the cracks ofthe system.

Deinstitutionalization in New York

New York State has been progressively deinstitutionalizing its long-term care for peoplewith disabilities, and under Governor Cuomo, is planning to transfer the remaining 1000individuals with intellectual disabilities who remained in developmental centers as ofApril 2013 into more integrated settings.34 This decision follows a string of public

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criticism of the states treatment of the developmentally disabled, and of the widespreadabuse that existed across the system. The New York Times covered the debate in itsseries Abused and Used, bringing the realities of the institutional system to the publicsattention.35The series described stories of accidental deaths in institutions, physical andpsychological abuse, lack of oversight, failed health inspections, and unqualified and

overworked staff, thereby increasing public pressure to revisit the management of thesystem.

In the January of 2012, the Department of Health and Human Services issued a reportcriticizing New York States oversight of care for the developmentally disabled, andaccusing the Commission on Quality Care and Advocacy for Persons with Disabilities which was charged with this task for lacking independence from the governor, and forbreaking its obligations under federal law.36 In June 2013, the Commission wasdissolved, and its responsibilities transferred to the New York State Justice Center for theProtection of People with Special Needs.

Meanwhile, in November 2012, Governor Cuomo issued Executive Order Number 84 tocreate the Olmstead Plan Development and Implementation Cabinet, with a mandate todesign policies to provide services to people with disabilities in the most integratedsettings possible.37Ultimately, New York State is moving away from institutionalizationas a solution for providing long-term care, and is instead choosing to promote home andcommunity based care.

Trend #3: Home and Community Based Care (HCBC)As states move away from institutionalization, they are opting to provide HCBC topeople with disabilities, theoretically ensuring that medical needs are met while allowingthese individuals with greater autonomy and access to participate in society. Thesepolicies have also become popular with states seeking to reduce the expenditures for

long-term care being spent on nursing homes and other institutions.

In order to prompt a transition towards HCBC, the Nursing Home Transition Programwas established from 1998 until 2000 to give grants to nursing home residents whowished to relocate from institutions to community settings.

38Similarly, the 2005 Deficit

Reduction Act included provisions to support state transition programs by expandinghome-based services and creating alternatives to nursing home placement.39 This actcreated the Money Follows the Person Program, which was designed to help individuals

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funded by Medicaid transfer to HCBC while maintaining their Medicaid coverage.

As people move away from institutionalization, care can be provided in a variety of ways.Many people with developmental disabilities are receiving care directly from theirfamilies. Adult day services are also a possibility for caregivers who need assistance with

these constant responsibilities. A compromise between institutionalization and fully-integrated community care are assisted living residences (ALR), which are housingoptions that provide 24-hour on-site monitoring and care services in a home-like settingfor a group of five or more adults.40Finally, home health care services allow the disabledto receive care services, depending on the needs of the individual, while livingindependently at home.

Many states, including New York, are experimenting with managed care systems, inwhich the state contracts out the task of providing care to community-based organizationswho are better able to meet the individual needs of their members.

Trend #4: Rights Based PolicyAlthough rights-based policies are more prevalent abroad than they are in the UnitedStates, it is important to recognize their existence as a trend for long-term care provision.These policies move beyond simply providing medical care to people with disabilities,and instead attempt to use the process of providing HCBC to simultaneously combatsocial barriers to disability.

In 2006, the United Nations passed the Convention on the Rights of Persons withDisabilities (CRPD), which promotes the use of policy based on the rights-based socialmodel to help people with disabilities from around the world overcome the societalbarriers that prevent them from fully participating in their countrys progress anddevelopment. This document, which has not yet been ratified by the United States, will

be the foundation for how the United Nations discusses disability in its post-2015Agenda. The European Union has also begun to use rights-based policies in its regionalagreements and more specifically, its 2004-2010 Action Plan on disability, whichexplicitly recognizes the validity of the social model, and which lays out a policyframework that focuses on anti-discrimination, mainstreaming and accessibility.

41

A New Focus for Future Policy

Although the primary function of care policies is to ensure that the medical needs ofindividuals are met, it is increasingly recognized that the method through whichindividuals receive care plays a large role in how well they are integrated into society.Therefore, when comparing alternative methods for providing long-term care for peoplewith disabilities, policymakers must consider how well they address the issues raised byboth models of disability, and how well they fulfill the following requirements:

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Promoting Health

1.Meets the Medical Needs from Each Persons ImpairmentAs discussed in the medical model, policies that provide care for people withdisabilities must address any medical needs arising from an individuals

impairments. This would include treatments of impairments, as well as theprovision of corrective tools, assistive technology, mobility aids, rehabilitation, oradaptations of a living environment. Ultimately, care policies should work toincrease a persons capabilities, regardless of their impairment, withoutattempting to set a standard of what normal functions should look like.

2.Meets General Medical NeedsIn addition to medical needs arising from impairments, people with disabilitieshave the same basic health needs as people without disabilities. Therefore,policies must ensure that they receive general healthcare coverage, and haveaccess to the same healthcare treatments that are recommended and provided to

individuals without disabilities.

3.Accessible CareAccessibility has several meanings. Firstly, it assumes that people can physicallyreach locations where services are provided with relative ease. Secondly, servicesshould be provided in ways that accommodate the physical or mental needs ofpeople with disabilities. Individuals should not be denied care because theseaccommodations do not exist. For people with intellectual or developmentaldisabilities, services should be available and constant, even if their guardians areno longer able to monitor and provide them.

4.Affordable CareDue to the high costs of their additional medical needs, people with disabilitiesoften need to spend more money to achieve the same living standard as someonewithout a disability. Care policies should attempt to minimize the cost entailed inproviding services to people with disabilities, and individuals should not bedenied medical services because of the cost. Care services should also not come atthe expense of an individuals living standards.

5.Flexible Individualized CarePolicies should recognize the wide variation between people with disabilities even between those with the same medical diagnosis and should allow

individuals to tailor their care services around the type of life that they would liketo live.

Promoting Social Integration

1.Promotes Autonomy and IndependencePeople with disabilities should have the ability to choose where and how theylive, without fearing a discrepancy in the services they receive, and they shouldreceive assistance to live their lives independently. This means that they should


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not be required to depend on people who are unable or unwilling to ensure thatthey receive proper care services. This is especially true for people withdevelopmental and intellectual disabilities, who continue to depend on theirfamily for long-term care.

2.Provides Opportunities to Engage with SocietyPeople with disabilities should have the ability to engage in social activities oftheir choice. This means that they should live in an environment where theseactivities are accessible, and where they can reach transportation to go where theywish. People with disabilities should have the capabilities to receive an education,or enter the labor market, should they so wish. Their choices of what to do in lifeshould not affect the medical services they receive.

3.Promotes RespectCare providers should treat people with disabilities in the same way, as theywould people without disabilities. Policies should recognize that people with

disabilities have the same desires in life as people without disabilities, and thatthey should not be discriminated against because of their impairments. Policiesshould seek to increase living standards.

4.Upholds Legal Rights of Persons with DisabilitiesPolicies should recall that laws already exist protecting the basic human rights ofpeople with disabilities, and should provide accountability measures to ensure thatthese are upheld.

5. Safe CarePeople with disabilities should be safe from abuse or exploitation.

Spectrum of Care

There exists a wide range of policy alternatives to provide long-term care for personswith disabilities, which, for the sake of comparison, can be said to lie along a spectrumbased on how much each allows for integration in society. At one end of the spectrumyou have complete segregation, in which people with disabilities live apart from thegeneral population. At the other end of the spectrum, you have complete integration, inwhich people with disabilities live within society, with equal capabilities as peoplewithout disabilities.

Institutions and Nursing Homes Care Apart From SocietyOn one end of the spectrum, we find care policies in which people with disabilities liveapart from the general population in an institutionalized or nursing home setting.

The benefits of these policies stem largely from the medical model of disability. Withinthese settings, it is easier to ensure that people with disabilities have access to the careand medical services that they need for their daily activities, and to ensure that services


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are efficiently distributed between populations with similar needs. This is especiallyuseful for individuals who are unable to care for themselves, or for whom nobody else isable or willing to provide care. Many of these homes do promote respect for those wholive within them, and allow them to participate in activities that they might not be able toenjoy elsewhere.

These policies are problematic because they promote an inherent separation from society.Institutionalization tends to emphasize medical benefits, at the expense of the more basicrights of people with disabilities to actively participate in society. First of all, research hasshown that people who have lived in institutional settings have a very hard time learninghow to live independently once they leave again suggesting that people who enter thesehomes will find it difficult to leave them, even if they should wish to do so.42Secondly, itis difficult to ensure accountability in institutions, and history has shown that people withdisabilities who remain outside of the publics attention are vulnerable to abuse.Although certain institutional settings might provide respectful and good quality care,such standards cannot be ensured across the board. Finally, institutional care remains

expensive for state governments especially given that the federal government does helpcover the costs of individuals in state-run institutions and also because it removes mostpossibilities for individuals to earn a living within the wider society.

Home and Community Based Care The System As We Are Now Building It

Moving along the spectrum, we find the myriad of different HCBC policies, which focuson providing medical care to individuals with disabilities, while allowing them to live intheir homes or communities.

The value of these policies is that they allow people with disabilities to receive care in

more integrated settings in compliance with Olmstead while giving them a range ofchoices on how much and what type of care they need to meet their medical needs.People with disabilities who live in their communities have greater opportunities toparticipate in the society around them.

Unfortunately, one of the biggest risks with HCBC is that communities can prove unableto provide for the needs of people with disabilities, especially if policies are not put inplace to ensure that they have the necessary resources to provide care, and understandingof how to use them effectively. Similarly, not all forms of HCBC ensure that people withdisabilities are able to integrate themselves in society, and all too often, they remainsegregated from social activities while living at home. This is in large part due to the fact

that current HCBC policies still focus predominantly on providing medical coverage tothe disabled, without considering what can be done to help these individuals expand theircapabilities.

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Integration

The final end of the spectrum while still largely theoretical represents a set of carepolicies that would allow individuals with disabilities to receive community-based carethat moves beyond providing for their medical needs, by including a mandate to help

them participate in society in the fullest way possible. This form of policy would be themost beneficial to people with disabilities, in terms of ensuring that they are granted therights to fully engage with society.

This form of policy would be the most difficult to implement, as it would requirepolicymakers to reconsider the underlying purpose of care, and ask society in general toshift its perception that its sole responsibility towards the disabled is the provision ofmedical care. Furthermore, it would require care providers to remain flexible around theneeds of each individual a task that is difficult to accomplish in a large statebureaucracy. On the other hand, an alternative integrated system that relies on smallermanaged care providers is difficult to coordinate or keep accountable.

Ultimately, it is towards this end of the spectrum to which we should be aiming. HCBC,as we see it today, is a move in the right direct in relation to the alternative ofinstitutionalization, and yet the status quo continues to perpetuate segregated medicalsystems and lifestyles for people with disabilities.

Case Study: Independence Care Systems

Independence Care System is dedicated to supporting adults with physical disabilities

and chronic conditions to live at home and participate fully in community life.

- Independence Care Systems Mission Statement

Independence Care Systems (ICS) is an important case study for how a community-basedorganization that deals with long-term care for the disabled can simultaneously meet themedical needs of its members, while helping them to integrate themselves into society.

ICS is a Medicaid-based disability care coordination organization in New York City thatbases its programs on three fundamental beliefs: that people with disabilities are capableof taking a leading role in designing and managing their own healthcare and socialsupport; that people with disabilities deserve a services system that blends social support

with medical services; and that individuals with disabilities each have their own uniqueneeds and preferences.43 As a disability care coordinator, ICS is a blend between amanaged care organization and a HCBC provider, and is characterized by offeringcomprehensive psychological and social assessments of its members; self-directedperson-centered planning; support during health visits; a centralized medical-social

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record; engagement with community resources; and constant communication withmembers.

44Overall, they provide their members with access to a series of services and

programs several of which go above and beyond what is offered under Medicaidprograms and help them design a set of services tailored to their needs.

The organization was created in 2000 after its founders began recognizing flaws inMedicaids fee-for-service programs, under which it is widely recognized that adults withdisabilities underutilize available services, and which is inflexible when it comes totailoring services to individual needs.45They found that the status quo failed to provideadequate services to adults with disabilities in a multitudes of way, among them the factthat primary care providers often lack training on how to deal with people withdisabilities, or that many preventative service providers, such as dentists, lack thetechnology to make their services accessible to the disabled. The were also frustrated byMedicaid regulations for rehabilitation that focus solely on restoring physical ability, andwill not reimburse maintenance therapy often required by people with physicaldisabilities.46

Moving beyond the basic medical services of Medicaid, ICS also works to help itsmembers actively engage with their communities. For example, they designed awheelchair repair service to ensure that their members remained unconstrained by abreakdown in their primary means of transport, and they help their members select theproper wheelchair for their choice of daily activities.47 They also partner with homehealth aide service providers to train new aides on how to go beyond acting as theassistant to a person with a disability, and instead become the link between other careproviders, and the disabled person that they are assigned to assist.48

ICS recognizes that its most successful initiatives have been to combine caremanagement with preferred provider relationships, in which they work directly withservice providers to design a set of services for their members.49For example, with itsnew Womens Health Access Program, ICS worked with providers of breast cancerscreening and gynecological services to ensure that women with physical disabilities hadthe ability to get the same general medical services as other women.50 In creating thisprogram, ICS helped these service providers train their staff on disability sensitivity, andensured that they had the additional technology needed to give physically disabledwomen these services.

Policymakers should look at ICS as an example of how care providers can use their role

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to help individuals with disabilities actively participate in society. They are uniquebecause of the shift in focus in their mission statement and in their founding principles,but their success towards their members proves that there is a demand for individualized,socio-medial services that they provide.

Policy Recommendations

Future policies of long-term care for people with disabilities must continue to promoteHCBC and the ability for individuals to live in the least restrictive setting possible.However, they must also move beyond the medical focus that continues to dominate theimplementation of current care policies, and instead use the provision of long-term careas a means to help promote the inclusion of people with disabilities in society. Theultimate, long-term goal of all policies should be to promote an integrated society inwhich individual capabilities are equal between disabled and non-disabled individuals.

1.Changing the Purpose of CarePolicymakers must start by measuring the success of care providers based on their ability

to simultaneously provide for the medical needs of people with disabilities, whileproviding them with the basic services and capabilities to help them engage with society.Policies should be compared using measures that consider how well they promote boththe health and social inclusion of people with disabilities (see pg. 12). As long as carepolicies are designed exclusively around the ideals of the medical model of disability,then the social barriers around them will continue to keep them segregated from the restof society.

2. Increasing Access to Care CoordinatorsICS has proved to be able to link together the medical and social needs of its memberswhen designing new programs. Unfortunately, most existing care coordinators are for theelderly, and not people with disabilities. Policymakers should either both provide supportto coordinators that already exist, and help in the creation of new organizations that couldfulfill this role.

3. Support for Family CaretakersAs the state closes institutions, families of people with disabilities are taking on theburden of providing them care. Policymakers should provide assistance to thesecaretakers either by allowing people to earn a wage from the state when taking on therole of primary caretaker for a disabled family member, or by providing them withassistance in the form of well-trained aides, or adult day care programs.

4. Care Coordinators for the Intellectually DisabledExisting care coordinators only offer services to people with physical disabilities, and notthose with intellectual or developmental disabilities. Nevertheless, if individuals from thislater group are to live autonomously in society and not, as many now do, remaindependent on family support then they will need assistance from well-trainedindividuals who can help them navigate the long-term care bureaucracy, and design a set


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of services to meet their needs. This service, which as of yet does not exist, would be ofincredible use to individuals who would like to remain in a community setting, but whootherwise would not be able to take care themselves.

5. Cooperation with Disabled Peoples Organizations (DPOs)People with disabilities are always the most knowledgeable about their own needs.Organizations such as ICS are so successful in large part because they include peoplewith disabilities among their decision makers and staff. Policymakers should work withthese organizations when designing new care policies, and should remain available oncepolicies are implemented to receive feedback.

6. Partnerships with Care ProvidersMany medical facilities are not equipped or welcoming to people with disabilities.Policymakers should work directly in partnerships with care providers and medicalfacilities in order to help them become more sensitive to the needs of people withdisabilities, and redesign their services in order to be accessible to the disabled.

7. Disability Sensitivity TrainingSocial barriers to the disabled exist outside of the realm of long-term care, and sopolicymakers should promote disability sensitivity training for people working at alllevels of state programs.

8. Mainstreaming DisabilitySocial inclusion cannot occur by changing long-term care policies alone. Policymakersmust also consider ways of considering the needs of the disabled in all of their policydecisions, and should continue to engage people with disabilities in discussions on waysin which they could be better integrated.

Conclusion

As New York State shifts away from institutionalization, it is crucial that new policies toprovide long-term care for people with disabilities also be used as a tool to promote theirfull social inclusion. A properly implemented care policy could act as the foundation thatwould allows the disabled to engage with the rest of society as equals, by challenging theassumptions from centuries of habits that state that the people with disabilities should befixed if they are to participate in society. Now is the time for social interactions with thedisabled that promote new habits of inclusion, accommodation, acceptance and respect.


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inclusion through care: an analysis of how long-term care policies can promote social inclusion for...

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