INCLUSION THROUGH CARE

AN ANALYSIS OF HOW LONG-TERM CARE POLICIES CAN PROMOTE SOCIAL INCLUSION FOR
PEOPLE WITH DISABILITIES



Audrey Stienon
Roosevelt House Public Policy Institute at Hunter College
Public Policy Capstone
December 4, 2013
Stienon, 1
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.................................................................................................. 9
Deinstitutionalization in New York......................................................................................................... 1u
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 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! "+



Stienon, 2
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 less
paid.
1
Several laws exist protecting their right to be fully included in society, and yet our
policies for long-term care perpetuate their segregation. This paper will discuss ways in
which policies can be used to care for the disabled while allowing for and encouraging
their full participation in society.

There are two basic definitions of disability. The medical model describes disability as
being caused by a persons impairment, and therefore recommends policies to offer
treatment for these impairments. The social model defines disability as being caused by a
set of social barriers that put people with impairments at a disadvantage, and therefore
recommends policies to remove or these social barriers. The capabilities framework,
developed by Amartya Sen, offers a way to reconcile these two models, by measuring
equality based on peoples capabilities to achieve certain end goals.
2
Policies should
consider the intersection of these models of disability when considering ways to integrate
the disabled into society.

People with disabilities began to be explicitly segregated from society during the
industrial revolution, when they began to be placed into institutions. In the 1960s,
disability rights organizations began to advocate for the right of all individuals to
participate in society a movement that spurred a deinstitutionalization movement across
the country. Unfortunately, the poorly coordinated deinstitutionalization movement for
the mentally ill demonstrates the risks of closing institutions without ensuring that
communities have the proper resources to care for the medical needs of those leaving
these institutions. Home and community based care services offer an alternative to
institutions that allow the disabled to engage with society, and yet many of these care
providers continue to solely emphasize the medical needs of their clients. In other parts of
the world, rights based policies are being used to ensure that social barriers to the
inclusion of people with disabilities are removed.

When comparing alternative methods for providing long-term care for people with
disabilities, policymakers must consider how well they address the issues raised by both
models of disability, and must consider how well they promote both health and social
inclusion.

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

1
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Stienon, S
from engaging with society. At the other end of the spectrum lie community-based
policies that also combat social barriers to people with disabilities, and which promote
full integration. These latter policies, although theoretical, would require a shift in the
default assumptions behind current care policies, and would require the greatest amount
of flexibility from care providers. However, these policies would hold the greatest benefit
for people with disabilities. The community-based care policies that currently exist make
up the middle of the spectrum, given that they allow for more community participation
that do institutions, but they still focus on providing for medical needs, rather than also
combating social barriers.

Independence Care Systems is a care coordinator in New York City that serves as a good
case-study for how an organization can simultaneously meet the medical needs of its
members, while helping them to integrate themselves into society. The organization goes
beyond the medically-focused services provided by Medicaid, and offers its members the
chance to live in and engage with communities. Furthermore, they work with service
providers 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 in
which individual capabilities are equalized between disabled and non-disabled
individuals. Policymakers should consider such initiatives as:

Changing the assumed purpose of care to also consider the promotion of social
inclusion 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 or
developmental 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
Stienon, 4
Disability, Inclusion, and Care
Although several laws exist guaranteeing people with disabilities the right to be included
in 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 in
which policies can be used to care for the disabled while allowing for and encouraging
their 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.
3

This constitutes a larger percentage of the
population than individuals over the age of 65,
even though the growth of the later group is more
often cited as a cause of rising healthcare costs.
4


Long-term care is expensive in and of itself, and it
constitutes 31.5 percent of Medicaids
expenditures nation-wide.
5
Nevertheless, although
people with disabilities often require similar
services to the elderly, they usually require greater
resources for a longer portion of their lives than
do other Medicaid recipients; in 2010, 42 percent,
or over $21 billion of New Yorks Medicaid
payments were made to people with disabilities,
whereas only 27 percent went to the elderly, and
19 percent went to other adults.
6
Furthermore,
given that disability prevalence increases with
age, the costs of disability care are likely to rise as
the Baby Boomer generation grows older.
7
If the
state government is to consider new ways in
which to reduce spending on healthcare, then it
must consider new strategies to provide care to its
disabled population.
8



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Nina, "With Neuicaiu, Long-Teim Caie of Elueily Looms as a Rising Cost."
6
"Bistiibution of Neuicaiu Payments by Eniollment uioup, YF2u1u."
7
von Schiauei et al., .%)'/%0%,A B 9"<06A"#(, 1233 :,',7) C#<6$,.
8
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Souice3 Nina, "With Neuicaiu, Long-Teim Caie of
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Stienon, S
People with disabilities face multiple barriers preventing them from participating in
society as easily as people without disabilities; People with disabilities are more likely to
be unemployed, more likely to earn lower wages, and more likely to live in poverty.
9

Disability 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 to
consider the social barriers that these individuals would have to face regardless of their
disability, and must simultaneously serve the needs of these communities.

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

Furthermore, over 25 percent of the primary caretakers of persons with developmental
disabilities, a large majority of whom still live with their family members, are over the
age of 65.
10
Given that modern medical advances make it increasingly likely that people
with disabilities will live past the age of 60, their current caretakers are unlikely to be
able to assist these disabled individuals throughout the full duration of their lives.
11
The
state must therefore simultaneously ensure that proper care is provided to those who are
exiting institutions, as well as to those who are living with family members who will no
longer be able to provide them with constant care. Furthermore, care providers will need
to increasingly focus on treating ailments that develop as individuals age, and that are
made more likely because of their previous disability; higher rates of survival must also
be matched with a better quality of life.
12


Nevertheless, it will not suffice to simply expand the existing care system, given that
adults with disabilities in New York State, are likely to report that their coverage is
inadequate.
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 the
population to have chronic health conditions, more likely to have had not exercised the
previous month, more likely to rate their health status as fair or poor, less likely to get

9
Biault, !"#$%&'() +%,- .%)'/%0%,%#) 12324 567)#-608 9&6(6"%& :,',7).
1u
Bellei, "People with Intellectual anu Bevelopmental Bisabilities uiowing 0lu: An
0veiview."
11
Foi moie uetails about the costs - both monetaiy anu psychological - of being a
paient anu caietakei foi an auult chilu with an intellectual oi uevelopmental
uisability, see: Kiopf anu Kelly, "Stigmatizeu anu Peipetual Paients."
12
Bittles anu ulasson, "Clinical, Social, anu Ethical Implications of Changing Life
Expectancy in Bown Synuiome."
1S
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='&,6$ :7$;#%00'(&# :A),#".
Stienon, 6
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 implications
on how easily they are able to live autonomously and independently, and therefore should
be seen as the foundation of how people with disabilities are integrated into society.

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

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 the
deinstitutionalization movement, as are care providers who do not want to deal with the
extra 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 so
benefit directly from a shift to community-based care services. Similarly, care providers
with a more rights-based orientation are also more in favor of deinstitutionalization.

Families of people with disabilities, and especially of people with intellectual or
developmental disabilities, often take on the responsibility of providing care when
institutions are not available. They are interested in seeing adequate resources being
provided 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 the
general public, policies that promote social integration will indirectly affect everyone in
society, and might require that certain groups make accommodations in order to increase
accessibility for people with disabilities. While they will not engage in the debate of how
to design new policies, people in the public will oppose policies if they are poorly
managed, 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 major
life activities of such individual; record of such an impairment; or being regarded as
having such an impairment.
15


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

14
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Stienon, 7
contextualize disability, and demonstrate the different paradigms within which disability
policies are created.
The Medical Model
The medical model of disability defines disability as a problem located within an
individual that prevents them for leading a normal life. In effect, this model looks at an
individuals medically defined impairment be it any physical or mental loss of function
and attributes to it responsibility for this persons inability to participate fully in
society. People in a wheelchair are disabled because they cannot walk, and therefore
cannot climb steps, or reach certain spaces. The blind are disabled because they cannot
see, and therefore cannot read.

Policies based on the medical model focus on ways to either cure an individuals
impairment, or otherwise provide a treatment for their impairment. This approach implies
that, in order to participate in society, people with disabilities must be altered so that they
more closely resemble people who are deemed to be fully functional. Long-term care
policies based on this model are designed to effectively and efficiently meet the medical
needs 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 has
been the predominant model throughout most of our history, and that opposition to this
model has only appeared recently.
The Social Model
The social model of disability defines disability as situation caused by exclusionary
societal barriers, which puts individuals with an impairment at a disadvantage. According
to this model, people are disabled because society does not accommodate their physical
or mental differences, causing them to be excluded from daily social activities. People in
wheelchairs 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 be
included as equals in society, and work to limit the social barriers facing the disabled. In
contrast to the medical model, disability is no longer seen as the intrinsic problem of the
individual, and it is a matter of social justice that social barriers be removed.
17

The Capabilities Framework
Although not a model that deals exclusively with disability, the capabilities framework
provides an alternative description complimentary to the social model of how
individual disadvantages stem from social or economic barriers.
18
According to this
framework, an individuals wellbeing should be measured using their capability to
participate in a range of activities, and inequality between people should be measured by
looking at when the environments around individuals limit their capabilities,

16
Lawson, "The E0 Rights Baseu Appioach to Bisability."
17
Buichaiut, "Capabilities anu Bisability," 7S2.
18
Ibiu., 7SS.
Stienon, 8
opportunities, or choices.
19


If we are to discuss disability using this framework, then we must assume that people
with disabilities should, in an ideal and perfectly equal society, have the same capabilities
or 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 should
have the ability and freedom to engage in those that they wish to. Liberation from
disability is about having choices, not about living life in conformity to some pre-defined
notion of normality.
20


This framework is important in terms of disability policy because it defines equality
through peoples ability to participate in certain activities, without differentiating
between the different ways in which people participate. This means that three individuals
could be considered equally capable of communicating, even if one were speaking, the
second were using sign language, and the third using assistive technology; the end action
is all that matters. If we accept the social models premise that people are disabled by
societys inability to accommodate their impairments, then the capabilities framework
suggests that policies should focus on expanding the different ways in which people can
remain active in society, regardless of these impairments.
Intersecting the Models
Successful policies for providing long-term care to the disabled must take these models
into account, since each of them describe a different perspective of how the disabled are
excluded from society. The medical model recognizes that people with disabilities have
intrinsic medical needs that must be dealt with if they are to participate in society, and it
recognizes that there is much that science and technology can do to help individuals
overcome the limits of their impairments. However, the social model adds nuance to this
mindset, by explaining how social factors also limit people with disabilities, and how
policies can be used to mitigate these external barriers. Finally, the capabilities
framework provides a paradigm in which both of these models can work to increase the
capabilities 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 the
policies used to provide care to people with disabilities. If we look at the history of how
the United States and other Western countries have chosen to care for the disabled, we
can see four general trends in policy that allow for different balances between the
disability models.
Trend #1: Segregation and Institutionalization
People with disabilities were never highly regarded in society, and yet they were often

19
Ibiu., 7S9.
2u
Ibiu., 742.
Stienon, 9
allowed to contribute to the agricultural economy of pre-industrial Europe.
21
In 1601, the
British Poor Law began to push people who were unable to earn a living for themselves
into institutions a move which was exacerbated as the Industrial Revolution placed an
emphasis on a factory system wherein wages depended on a workers ability to complete
tasks in given amounts of time.
22
The disabled quickly got excluded from the labor force,
and were labeled as being the undeserving poor.
23
Meanwhile, the asylum movement
attempted 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 institutions
were viewed as efficient ways to watch over and care for the disabled, while keeping
them out of the way from the general population.
Trend #2: Deinstitutionalization
A disability-rights movement began to emerge in the United States in the 1960s, and
began to push back against institutions. In tandem with the Civil Rights and womens
movement, the disability-rights movement advocated for the right to be allowed to live
with and participate in society. Institutions were increasingly seen as inhumane, and
conflicting with individuals right to autonomy over their lives. These arguments were
facilitated by advances in medical technology that allowed disabled individuals to receive
medical treatment in community settings.

Slowly, state and federal laws were changed to reflect these new expectations. With the
1981 Omnibus Reconciliation Act (OBRA), Congress allowed the federal government to
grant waivers to those using Medicaid who wish to receive home and community based
care; this marked an important shift in Medicaid policy, which had previously only
offered long-term services coverage for those entering institutional settings.
26
New York
State 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
In
1999, the Supreme Court ruled in Olmstead v. LC that unnecessary institutionalization
violated the 1990 Americans with Disabilities Act (ADA), and therefore required that
states ensure that persons with disabilities receive services in the most integrated setting
appropriate to their needs.
28

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

21
Nalhotia, "The Politics of the Bisability Rights Novement."
22
Picking, "Woiking in Paitneiship with Bisableu People: New Peispectives foi
Piofessionals Within the Social Nouel of Bisability," 11; Ibiu
2S
Nalhotia, "The Politics of the Bisability Rights Novement."
24
Picking, "Woiking in Paitneiship with Bisableu People," 12.
2S
Nalhotia, "The Politics of the Bisability Rights Novement."
26
"Neuicaiu Bome-anu-Community-Baseu Waivei Piogiams in New Yoik State -
New Yoik Bealth Access."
27
Ibiu.
28
"0lmsteau: Community Integiation foi Eveiyone."
Stienon, 1u
aftermath of the widespread closure of state institutions for the mentally ill.

The movement away from mental health institutions began as states funded small
community programs for individuals who could be treated by the new anti-psychotic
medications that were being developed.
29
In 1963, President Kennedy passed the
community mental health act, which aimed to build community-based mental health
centers that would allow people with mental illness to receive treatment while living at
home.
30
Similarly to the disability-rights groups, the mental health community argued
that deinstitutionalization would allow individuals to live higher quality and more
autonomous lives, and therefore welcomed this legislation. President Carters
Commission on Mental Health even lauded the "the objective of maintaining the greatest
degree of freedom, self-determination, autonomy, dignity, and integrity of body, mind,
and spirit for the individual while he or she participates in treatment or receives
services."
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 the
community centers proposed under Kennedy were even built, and those that existed were
often understaffed and short on resources.
32
While certain individuals did experience the
increase in autonomy that the policy had promised, many others finding themselves
without access to their medications or medical services found themselves either
homeless, 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 communitys
deinstitutionalization movement cannot be forgotten. Although community care might
promise to be more cost-effective for states, policymakers must still ensure that adequate
resource are provided to communities to meet the need of the people who live there, as
well 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 of
the system.
Deinstitutionalization in New York
New York State has been progressively deinstitutionalizing its long-term care for people
with disabilities, and under Governor Cuomo, is planning to transfer the remaining 1000
individuals with intellectual disabilities who remained in developmental centers as of
April 2013 into more integrated settings.
34
This decision follows a string of public

29
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Su
"Community Nental Bealth Act: Kenneuy's vision Nevei Realizeu."
S1
"Beinstitutionalization: A Psychiatiic 'Titanic.'"
S2
"Community Nental Bealth Act: Kenneuy's vision Nevei Realizeu."
SS
Koyanagi, K#'$(%(L H$6" 5%),6$A4 .#%(),%,7,%6('0%M',%6( 6H @#6<0# +%,- N#(,'0
O00(#)) ') @$#&7$)6$ ,6 K6(LP>#$" D'$# C#H6$".
S4
Cuomo, C#<6$, '(8 C#&6""#(8',%6() 6H ,-# ?0"),#'8 D'/%(#,4 ! D6"<$#-#()%;#
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Stienon, 11
criticism of the states treatment of the developmentally disabled, and of the widespread
abuse that existed across the system. The New York Times covered the debate in its
series Abused and Used, bringing the realities of the institutional system to the publics
attention.
35
The series described stories of accidental deaths in institutions, physical and
psychological abuse, lack of oversight, failed health inspections, and unqualified and
overworked staff, thereby increasing public pressure to revisit the management of the
system.

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

Meanwhile, in November 2012, Governor Cuomo issued Executive Order Number 84 to
create the Olmstead Plan Development and Implementation Cabinet, with a mandate to
design policies to provide services to people with disabilities in the most integrated
settings possible.
37
Ultimately, New York State is moving away from institutionalization
as a solution for providing long-term care, and is instead choosing to promote home and
community based care.
Trend #3: Home and Community Based Care (HCBC)
As states move away from institutionalization, they are opting to provide HCBC to
people with disabilities, theoretically ensuring that medical needs are met while allowing
these individuals with greater autonomy and access to participate in society. These
policies 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 Program
was established from 1998 until 2000 to give grants to nursing home residents who
wished to relocate from institutions to community settings.
38
Similarly, the 2005 Deficit
Reduction Act included provisions to support state transition programs by expanding
home-based services and creating alternatives to nursing home placement.
39
This act
created the Money Follows the Person Program, which was designed to help individuals

SS
"Abuseu anu 0seu." http:www.nytimes.cominteiactivenyiegionabuseu-anu-
useu-seiies-page.html
S6
Bakim, "0.S. Repoit Ciiticizes New Yoik on Nonitoiing Caie of Bevelopmentally
Bisableu."
S7
Cuomo, C#<6$, '(8 C#&6""#(8',%6() 6H ,-# ?0"),#'8 D'/%(#,4 ! D6"<$#-#()%;#
@0'( H6$ :#$;%(L F#+ G6$E#$) +%,- .%)'/%0%,%#) %( ,-# N6), O(,#L$',#8 :#,,%(L.
S8
Fielus, Anueison, anu Babelko-Schoeny, "Reauy oi Not: Tiansitioning Fiom
Institutional Caie to Community Caie," 4.
S9
Ibiu.
Stienon, 12
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 their
families. 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 housing
options that provide 24-hour on-site monitoring and care services in a home-like setting
for a group of five or more adults.
40
Finally, home health care services allow the disabled
to receive care services, depending on the needs of the individual, while living
independently at home.

Many states, including New York, are experimenting with managed care systems, in
which the state contracts out the task of providing care to community-based organizations
who are better able to meet the individual needs of their members.
Trend #4: Rights Based Policy
Although rights-based policies are more prevalent abroad than they are in the United
States, 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 combat
social barriers to disability.

In 2006, the United Nations passed the Convention on the Rights of Persons with
Disabilities (CRPD), which promotes the use of policy based on the rights-based social
model to help people with disabilities from around the world overcome the societal
barriers that prevent them from fully participating in their countrys progress and
development. 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-2015
Agenda. The European Union has also begun to use rights-based policies in its regional
agreements and more specifically, its 2004-2010 Action Plan on disability, which
explicitly recognizes the validity of the social model, and which lays out a policy
framework 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 of
individuals are met, it is increasingly recognized that the method through which
individuals 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 people
with disabilities, policymakers must consider how well they address the issues raised by
both models of disability, and how well they fulfill the following requirements:


4u
D6()7"#$ O(H6$"',%6( Q7%8#4 !))%),#8 K%;%(L C#)%8#(&#.
41
Lawson, "The E0 Rights Baseu Appioach to Bisability."
Stienon, 1S
Promoting Health

1. Meets the Medical Needs from Each Persons Impairment
As discussed in the medical model, policies that provide care for people with
disabilities must address any medical needs arising from an individuals
impairments. This would include treatments of impairments, as well as the
provision of corrective tools, assistive technology, mobility aids, rehabilitation, or
adaptations of a living environment. Ultimately, care policies should work to
increase a persons capabilities, regardless of their impairment, without
attempting to set a standard of what normal functions should look like.

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

3. Accessible Care
Accessibility has several meanings. Firstly, it assumes that people can physically
reach locations where services are provided with relative ease. Secondly, services
should be provided in ways that accommodate the physical or mental needs of
people with disabilities. Individuals should not be denied care because these
accommodations do not exist. For people with intellectual or developmental
disabilities, services should be available and constant, even if their guardians are
no longer able to monitor and provide them.

4. Affordable Care
Due to the high costs of their additional medical needs, people with disabilities
often need to spend more money to achieve the same living standard as someone
without a disability. Care policies should attempt to minimize the cost entailed in
providing services to people with disabilities, and individuals should not be
denied medical services because of the cost. Care services should also not come at
the expense of an individuals living standards.

5. Flexible Individualized Care
Policies 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 like
to live.
Promoting Social Integration

1. Promotes Autonomy and Independence
People with disabilities should have the ability to choose where and how they
live, without fearing a discrepancy in the services they receive, and they should
receive assistance to live their lives independently. This means that they should
Stienon, 14
not be required to depend on people who are unable or unwilling to ensure that
they receive proper care services. This is especially true for people with
developmental and intellectual disabilities, who continue to depend on their
family for long-term care.

2. Provides Opportunities to Engage with Society
People with disabilities should have the ability to engage in social activities of
their choice. This means that they should live in an environment where these
activities are accessible, and where they can reach transportation to go where they
wish. 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 life
should not affect the medical services they receive.

3. Promotes Respect
Care providers should treat people with disabilities in the same way, as they
would people without disabilities. Policies should recognize that people with
disabilities have the same desires in life as people without disabilities, and that
they should not be discriminated against because of their impairments. Policies
should seek to increase living standards.

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

5. Safe Care
People 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 persons
with disabilities, which, for the sake of comparison, can be said to lie along a spectrum
based on how much each allows for integration in society. At one end of the spectrum
you have complete segregation, in which people with disabilities live apart from the
general population. At the other end of the spectrum, you have complete integration, in
which people with disabilities live within society, with equal capabilities as people
without disabilities.

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

The benefits of these policies stem largely from the medical model of disability. Within
these settings, it is easier to ensure that people with disabilities have access to the care
and medical services that they need for their daily activities, and to ensure that services
Stienon, 1S
are efficiently distributed between populations with similar needs. This is especially
useful for individuals who are unable to care for themselves, or for whom nobody else is
able or willing to provide care. Many of these homes do promote respect for those who
live within them, and allow them to participate in activities that they might not be able to
enjoy 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 basic
rights of people with disabilities to actively participate in society. First of all, research has
shown that people who have lived in institutional settings have a very hard time learning
how to live independently once they leave again suggesting that people who enter these
homes will find it difficult to leave them, even if they should wish to do so.
42
Secondly, it
is difficult to ensure accountability in institutions, and history has shown that people with
disabilities 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 help
cover the costs of individuals in state-run institutions and also because it removes most
possibilities 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 focus
on providing medical care to individuals with disabilities, while allowing them to live in
their 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 of
choices 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 to
participate in the society around them.

Unfortunately, one of the biggest risks with HCBC is that communities can prove unable
to provide for the needs of people with disabilities, especially if policies are not put in
place to ensure that they have the necessary resources to provide care, and understanding
of how to use them effectively. Similarly, not all forms of HCBC ensure that people with
disabilities are able to integrate themselves in society, and all too often, they remain
segregated 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 to
the disabled, without considering what can be done to help these individuals expand their
capabilities.

42
Fielus, Anueison, anu Babelko-Schoeny, "Reauy oi Not: Tiansitioning Fiom
Institutional Caie to Community Caie," S-7.
Stienon, 16
Integration

The final end of the spectrum while still largely theoretical represents a set of care
policies that would allow individuals with disabilities to receive community-based care
that 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 the
most beneficial to people with disabilities, in terms of ensuring that they are granted the
rights to fully engage with society.

This form of policy would be the most difficult to implement, as it would require
policymakers to reconsider the underlying purpose of care, and ask society in general to
shift its perception that its sole responsibility towards the disabled is the provision of
medical care. Furthermore, it would require care providers to remain flexible around the
needs of each individual a task that is difficult to accomplish in a large state
bureaucracy. On the other hand, an alternative integrated system that relies on smaller
managed 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 of
institutionalization, and yet the status quo continues to perpetuate segregated medical
systems 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-based
organization that deals with long-term care for the disabled can simultaneously meet the
medical 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 that
bases its programs on three fundamental beliefs: that people with disabilities are capable
of taking a leading role in designing and managing their own healthcare and social
support; that people with disabilities deserve a services system that blends social support
with medical services; and that individuals with disabilities each have their own unique
needs and preferences.
43
As a disability care coordinator, ICS is a blend between a
managed care organization and a HCBC provider, and is characterized by offering
comprehensive psychological and social assessments of its members; self-directed
person-centered planning; support during health visits; a centralized medical-social

4S
Suipin, "Inuepenuence Caie System: A Bisability Caie Cooiuination 0iganization
in New Yoik City," SS.
Stienon, 17
record; engagement with community resources; and constant communication with
members.
44
Overall, they provide their members with access to a series of services and
programs several of which go above and beyond what is offered under Medicaid
programs and help them design a set of services tailored to their needs.

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


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


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

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

44
Ibiu., S9-61.
4S
Ibiu., S4.
46
Ibiu., SS-S6.
47
Saviola, ICS Biookly Centei Toui.
48
Suipin, "Inuepenuence Caie System: A Bisability Caie Cooiuination 0iganization
in New Yoik City," S7.
49
Ibiu., 61.
Su
"Women's Bealth Access Piogiam."
Stienon, 18
to help individuals with disabilities actively participate in society. They are unique
because 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 promote
HCBC 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 the
implementation of current care policies, and instead use the provision of long-term care
as a means to help promote the inclusion of people with disabilities in society. The
ultimate, long-term goal of all policies should be to promote an integrated society in
which individual capabilities are equal between disabled and non-disabled individuals.

1. Changing the Purpose of Care
Policymakers must start by measuring the success of care providers based on their ability
to simultaneously provide for the medical needs of people with disabilities, while
providing 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 both
the health and social inclusion of people with disabilities (see pg. 12). As long as care
policies 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 rest
of society.

2. Increasing Access to Care Coordinators
ICS has proved to be able to link together the medical and social needs of its members
when designing new programs. Unfortunately, most existing care coordinators are for the
elderly, and not people with disabilities. Policymakers should either both provide support
to coordinators that already exist, and help in the creation of new organizations that could
fulfill this role.

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

4. Care Coordinators for the Intellectually Disabled
Existing care coordinators only offer services to people with physical disabilities, and not
those with intellectual or developmental disabilities. Nevertheless, if individuals from this
later group are to live autonomously in society and not, as many now do, remain
dependent on family support then they will need assistance from well-trained
individuals who can help them navigate the long-term care bureaucracy, and design a set
Stienon, 19
of services to meet their needs. This service, which as of yet does not exist, would be of
incredible use to individuals who would like to remain in a community setting, but who
otherwise 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 people
with disabilities among their decision makers and staff. Policymakers should work with
these organizations when designing new care policies, and should remain available once
policies are implemented to receive feedback.

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

7. Disability Sensitivity Training
Social barriers to the disabled exist outside of the realm of long-term care, and so
policymakers should promote disability sensitivity training for people working at all
levels of state programs.

8. Mainstreaming Disability
Social inclusion cannot occur by changing long-term care policies alone. Policymakers
must also consider ways of considering the needs of the disabled in all of their policy
decisions, and should continue to engage people with disabilities in discussions on ways
in which they could be better integrated.
Conclusion

As New York State shifts away from institutionalization, it is crucial that new policies to
provide long-term care for people with disabilities also be used as a tool to promote their
full social inclusion. A properly implemented care policy could act as the foundation that
would allows the disabled to engage with the rest of society as equals, by challenging the
assumptions from centuries of habits that state that the people with disabilities should be
fixed if they are to participate in society. Now is the time for social interactions with the
disabled that promote new habits of inclusion, accommodation, acceptance and respect.
Stienon, 2u
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