Inclusion, De-institutionalization, Discrimination, Advocacy
Inclusion, De-institutionalization, Discrimination, Advocacy
Developmental Disability is a term used to describe a
multitude of conditions, with varying degrees of severity, resulting from an
impairment in physical, learning, language, or behavior areas.₁ In fact, there are hundreds of types of
Intellectual and Developmental Disabilities. ₂ A large number of these
diagnoses is some form of Intellectual Disability.
Through the Ages
Historically, the treatment of individuals with intellectual
disabilities has always reflected changes in society.₃ In the period B.C., Persons with Intellectual
Disabilities (PWID) were seen as punishment from the gods or possessed by evil
spirits. However, the Romans did allow some form of protection to children with
ID who were born to the wealthy, by allowing PWID property rights and allowing
them to have guardians.₅ Greek and Roman
philosophers viewed PWID as useless and infanticide was widely practiced until
the second century; when defective persons were viewed as a source of
entertainment for families and there was a market where such persons could be
purchased. However, by the fourth
century, Christianity’s influence diminished the occurrence of infanticide.
Beginning in the Antiquities era in Europe, PWID were secluded
from the rest of society in miserable conditions. For example; “in 1606 The Hotel Dieu ordered by
King to tend all mentally ill and idiot people: The patients were herded
together in rooms crowded with miserable beds in which they were put without
distinction of disease; there were two, four, six, and even twelve people
bedded together in various positions…”₄
In France, the first systematic and documented intervention for PWID was
developed by a medical doctor, Jean-Marc Itard who developed a skill-based
program for a feral child he named Victor.
Eduoard Seguin took the doctor’s methods even further and established a
program to educate the “feebleminded.”
His program emphasized “physiological and moral education.” Some elements, such as individualized
instruction and behavior management, are still practiced.₅ The first known
facility specifically for PWID was established in Switzerland in 1841 by Johann
Guggenbühl. This facility gained
international attention and became a “prototype for institutional care.”₅
The practice of seclusion continued in the North American
British Colonies and early United States. PWID were housed in almshouses,
houses of corrections, hospitals, and asylums. PWID also were sold to people
who would cheaply provide for their care and maintenance. Another practice of
the time was to load PWID into wagons, to be transported to another town and
abandoned there.₄
Through the early and mid-1800s, there was an optimistic
view that PWID could be rehabilitated, trained, and reintegrated into “normal
life.”₅ As the United States became
more urbanized in the latter 1800s that optimism waned. Persons with more severe intellectual disabilities
were less able to adapt to the more industrialized and urbanized country; where
employability depended more on intellectual ability than physical ability. In addition, the progressive ideas of
rehabilitation, training, and reintegration, were disillusioned; despite best
efforts, “normalcy” could not be attained even though PWID could learn skills. During this time, they were blamed for
society’s woes: poverty, crime, and illness.
Society developed an alarmist attitude towards PWID and the idea that intellectual
disability was inherited developed; and the focus then became eliminating the
possibility of PWID and others to reproduce so as to select out heritable
traits that were undesirable. This school
of thought became the Eugenics Movement.
In the early 1900s, the Eugenics Movement gained momentum
and resulted in legislation legalizing forced sterilization in many states. Indiana was the first state to enact such
legislation in 1907 and by 1944, 30 states had sterilization laws. These laws were upheld by the United States
Supreme Court in the 1927 case Buck v. Bell, despite the fact that viable
research had shown not all people who’d been sterilized were PWID. Astonishingly, between 1907 and 1944, 42,000
people had been sterilized and another 22,000 between 1944 and 1963.₅ The
states of Virginia and Indiana had sterilization laws until repealed in 1974.₈
The Eugenics Movement further lent credence to the
unilateral segregation of PWID. In each state, hundreds of thousands of people
with mental illness or intellectual disabilities were placed in institutions,
the largest of which housed as many as 20,000 people. It was common practice
for physicians to tell families of children with disabilities to put their
child away and forget about him. The
purpose of these institutions was to protect society rather than ensuring the
well-being of the people who were institutionalized. Since the purpose was not to care for the intellectually
disabled, people were admitted without deference to the severity of their
disabilities and without due process then warehoused in deplorable conditions
with no legal recourse. In the late
1960s, state institutions across the nation housed almost 156,000 people with
intellectual disabilities. Although the environments were brutal, there were
virtually no alternatives to institutionalization.₆
The Disabilities Civil Rights Movement
The 1960s brought radical social change in the United States
with the Civil Rights Movement and the Civil Rights Act of 1964. As the Civil
Rights Movement began to take shape, disability advocates joined other minority
groups in seeking equal treatment, equal access, and equal opportunities for
people with disabilities.₇ Rose Kennedy,
President Kennedy’s sister, had intellectual disabilities and the Kennedy
family held a strong interest in the treatment of PWID. President Kennedy
established the President’s Council on Mental Retardation, now the President’s
Council on Intellectual Disability. A
photographic expose on Willowbrook State Center in New York and the movie, One
Flew Over a Cuckoo’s Nest, brought attention to the appalling, inhumane conditions
in institutions.₆ Head start, Medicare,
and Medicaid were established by President Johnson in his War on Poverty. In order for states to receive Federal
Medicaid funding, conditions at state institutions had to be improved. States
were mandated to provide 70 sq. ft. sleeping room per person. ₆ By the end of
the decade, the Disability Rights Movement was gaining momentum; with parents
at the forefront demanding that their children be released from asylums and
institutions.₇
By the turn of the century, great gains had been made in the
equal treatment, equal access, and equal opportunities for those with
disabilities. In 1973, the first U.S. federal civil rights protection for
people with disabilities was established in the Rehabilitation Act of 1973. The
Developmental Disabilities Assistance and Bill of Rights Act became law in 1975; establishing protection and advocacy
services, providing federal funds to programs serving people with developmental
disabilities, and outlined rights for those who are institutionalized. The Civil Rights of Institutionalized Persons
Act (CRIPA) of 1980 authorized the U.S. Department of Justice to file civil
suits on behalf of residents of institutions whose rights are being violated.
In 1985, the U.S. Supreme Court ruled that localities cannot use zoning laws to
prohibit the opening of group homes for the developmentally disabled in
residential areas solely because residents are disabled, (City of Cleburne v.
Cleburne Living Center). The National council on the Handicapped issued a
report, Toward Independence, in 1986; outlined the legal status of Americans
with disabilities, documented the existence of discrimination, and cited the
need for federal civil rights discrimination legislation. Congress, in 1988,
clarified its original intent of the Civil Rights Restoration Act; prohibiting
discrimination in any program or service that receives federal funding, not
just the part which actually receives the funding. In that same year, the
Congressional Task Force on the Rights and Empowerment of Americans with
Disabilities was created and began building grassroots support for the passage
of the Americans with Disabilities Act (ADA).
The original version of the ADA was introduced and disability organizations
across the country advocated on its behalf.
Redrafted and reintroduced in Congress later, the ADA passed in 1990.
Once enacted, the ADA provided comprehensive civil rights protections for
Americans with disabilities. Amendments to the Rehabilitation Act of 1973 were
infused with the philosophy of independent living in 1992. The U.S. Supreme Court held that individuals
with mental disabilities must be offered services in the most integrated
setting possible, (1999, Olmstead v. L.C.).₈
History Repeats Itself – Current Issues
Inclusion
Remember the optimistic view
in the early and mid-1800s that PWID could be rehabilitated, trained, and
reintegrated into “normal life”? While family members, friends, and guardians
would like for their loved ones to enjoy a life free of all stigmas, we have to
admit that society has not widely accepted PWID and that there is no magic cure
for those conditions which fall under the umbrella of developmental
disabilities. Recent rule changes for
Home Based and Community Services, as well as litigation by the Department of
Justice, have forced community programs to change how they render services to
the developmentally disabled. Structured
workshops, where PWID could be employed within a structured environment, have
been shut down and community programs must now attempt to find employment for
individuals within the community. Granted,
no one wants to see PWID exploited and neglected like the “Boys in the
Bunkhouse” in Iowa.₁₁ Employers cannot be forced to hire PWID or anyone else
for that matter, even if they fall under a protected status. Those who are not
employable are still served in day services which now have requirements of
spending time outside the service setting. None of the rules take into account rural
settings and the supports and services available in those areas. Community programs are scrambling to conform
to the new requirements. The rule changes cannot guarantee unilateral inclusion
because true inclusion depends on the societal acceptance. Until we educate and inform our society, we will
not be able to overcome ignorance and stigmas; and be truly inclusive.
Forced
De-institutionalization
The nationwide efforts for inclusion, budget cuts, and
the disgraceful history of state-run institutions have created an environment
of forced de-institutionalization. Many
states have closed the door on facilities providing services for the profoundly
intellectually and/or developmentally disabled; forcing them to seek services
within community programs where resources to provide those services are limited
or non-existent. People have died. Others have been exploited, neglected, or
abused. “More than 150 media reports in more than 30 states since 1997 reveal
systemic concerns in small settings for people with I/DD, including deaths,
abuse, neglect, and financial malfeasance. In November 2011, The New York Times that
more than 1,200 people with I/DD in the past decade have died in group homes
due to “unnatural or unknown causes.”xiv U.S. Senator Chris Murphy (DCT) has
called for a U.S. Department of Health and Human Services Office of Inspector
General investigation to “focus on the prevalence of preventable deaths at
privately run group homes across this nation and the widespread privatization
of our delivery system.” These tragedies, which should have been a wakeup call, have done
nothing to stem aggressive deinstitutionalization.”₉ This de-institutionalization is reaching beyond state-run intermediate
care facilities (ICF/IDs) “Today,
individuals with I/DD may have the option to live alone or with roommates in
their own home or apartment, in a group home, in an adult foster care home, on
a farmstead or ranch, or on a supportive living campus setting, all with
supports they need to be able to interact with the greater community to the
fullest extent possible. But four years
from now this may not be true. Recent
changes in federal and state regulations may limit what constitutes an integrated
residential setting. The Centers for
Medicare and Medicaid Services (CMS) issued new requirements about housing and
employment settings that states have five years to implement through State
Transition Plans. For a person with
I/DD, these changes may have the unintended consequences of reducing the
options available and increasing barriers to that individual’s right to choose
his or her preferred setting.”₁₂
Olmstead v. L.C.,
(“Olmstead”) was a landmark decision in which the United States Supreme Court
held , “States are required to place persons with mental
disabilities in community settings rather than in institutions when the State’s
treatment professionals have determined that community placement is
appropriate, the transfer from institutional care to a less restrictive setting
is not opposed by the affected individual, and the placement can be reasonably
accommodated, taking into account the resources available to the State and the
needs of others with mental disabilities.”₁₀ The Court further went on to say, “This Court emphasizes that
nothing in the ADA or its implementing regulations condones termination of
institutional settings for persons unable to handle or benefit from community
settings. Nor is there any federal requirement that community-based treatment
be imposed on patients who do not desire it.”₁₀ While
this appears to be straightforward and not open to further interpretation, it
has not ended the debate regarding institutions. Olmstead has been distorted to
fit the agenda of advocates with tunnel vision; who continue to push for deinstitutionalization
without any regard to the diverse and unique needs of the individuals they
claim to be protecting.
Government’s Role
Whether it is through blind
ignorance or outright greed, federal agencies have returned to that optimistic
school of thought from the mid to late 1800s.
Government attempts to put everyone in the developmental disability
community into one, neat, little box. The
Department of Justice has forced individuals with developmental disabilities to
seek employment in their communities, with little regard for supports an
individual might need to gain and sustain employment. HBCS rules are changed
without respect for the diverse communities in which persons with developmental
disability are served or for the individuality of those served. Government entities have misinterpreted
Olmstead and used it to justify closing facilities and forcing those who do not
benefit from community living into community programs or nursing homes. States
have tightened budgets for behavior health services; creating a divide in the
developmentally disabled population as they vie against one another to get the
funds for the services they need to live life to the fullest.
What can we do?
At times, it seems fruitless. Our words fall on deaf ears. We get discouraged, disillusioned,
exhausted. Sometimes, we feel ready to
give up. But then we wake up the next
morning and start again. Being an
advocate is personal. It’s important;
vital. As advocates, we are the voices
for those who cannot speak for themselves.
Our mission is to ensure that our loved ones receive the respect,
dignity, quality of life, and medically necessary services they deserve. What we must not do is become so focused on
the person we love that we lose sight of the bigger picture. We are not only his or her voice. We are the voice for all individuals with
developmental disabilities.
I’ve said it before and I’ll say it again. We must not lose sight of the bigger
picture. Developmental disability covers
a very wide range of conditions; intellectual disability, Autism, Down
Syndrome, Cerebral Palsy; just to name a few.
We must be the voice for everyone in the DD community; from Asperger’s
Syndrome to profound intellectual disability.
We must not discriminate within the community; someone who is profoundly
disabled is no more deserving than someone with Asperger’s; and vice
versa. Whether you belong to an advocacy
group for Autism, Down’s Syndrome, Cerebral Palsy, or intellectual disability,
we must all work towards a common goal; to ensure that persons with
developmental disabilities receive services centered on the diverse, unique,
and varying degrees of need within this population. Despite best efforts, persons with
developmental disabilities continue to suffer discrimination from the society
in which they live; discrimination from within this population and from
advocates is reprehensible.
Our voices must be united in educating the public in order
to ensure the end of stigmas and fears; to ensure acceptance, respect, and
dignity. We must lift our voices in
unison to demand funding for behavioral health programs at local and national
levels and refuse to compete over funding without deference to the rest of our
community. We must forge an alliance and
become one very large, unavoidable voice working towards these common goals for
this and future generations.
References
2. Right Diagnosis.com
http://www.rightdiagnosis.com/i/intellectual_or_developmental_disabilities/subtypes.htm
5. International Encyclopedia of Rehabilitation http://cirrie.buffalo.edu/encyclopedia/en/article/143/
7. Anti-Defamation
League http://archive.adl.org/education/curriculum_connections/fall_2005/fall_2005_lesson5_history.html
11.
The New York Times http://www.nytimes.com/interactive/2014/03/09/us/the-boys-in-the-bunkhouse.html?_r=0
12. Coalition for Community Choice http://coalitionforcommunitychoice.org/2015/08/ccc-statement-on-the-25th-anniversary-of-the-ada/
1 Comments:
Very good read, Shawn! I hope more people will rally behind you to unite on this issue :)
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