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

The Olmstead Decision

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.