ELLIE'S BLOG on Living Well with Disability

Living in the community is a long cherished dream for many with disabilities. But it was the awareness of the care of those with developmental disability 's that started the ball rolling to question why were we institutionalizing the disabled. In fact seeing the treatment of those who were in institutions was one of the factors in the passage of the ADA in 1990. This was following up by the Olmstead Act in 1999 after cases were brought to the Supreme Court. The Supreme Court's decision settled the issue legally. Their ruling was that people with disabilities have a right to choose the least restrictive setting whenever it was possible. That meant not forcing them into segregated settings in order for them to receive their necessary services thru Medicaid.

Yet it's been a slog with many who have had to fight the established system to be able to return to a life integrated in the community. In fact there have been 89 'Olmstead ' lawsuits in 35 states and 90 'Related cases to Olmstead also in 35 states.

It's now 2011 and only 26 states have published Olmstead plans and 18 states have   alternative responses. And there are still seven states (DC,FL,ID,NM,RI,SD,TN) who have neither an Olmstead plan or an alternative response to Olmstead. For more information from this report go to : http://www.facebook.com/event.php?eid=133211216769552 

The average cost of a person with a developmental /cognitive disability living in a State Institution in NY State  is $365,000 compared to 1/3 of that cost in a group home. The average annual cost of a nursing home nationally is about $75,000, according to a study by the AARP. Community services that allow people to remain at home are about $23,000.  One in Five (270,000 out of 1.35 million) nursing home residents indicated they would prefer to live in their community according to a survey by the centers for Medicare and Medicaid services. 

Change is hard! And not everybody wants change.  I think a look back in time would be useful and put current issues into perspective.

Prior to the late 18th and early 19th century people with developmental disabilities lived in the community mostly with their extended families. Their quality of life depended on their family and the community they lived in.

However, the enlightenment movement changed this. This worldwide movement felt that all people were capable of reasoning and we should look to the similarity in people as this was more important than  differences.  This philosophy led to the  establishment of State Schools to prepare individuals with disabilities for employment and independence.

However outside these school's no other opportunities were developed for living in the community and employment.  This was also the time when school's for the deaf and the blind were also established.

Sadly by the 1920s the State School's focus unfortunately  went from educational and independence to custodial care.  Younger and younger children were placed in the care of the State Schools.  The eugenics movement with forced sterilization of disabled and mentally challenged people including children was prevalent at this time. In fact over 30 States adopted compulsory sterilization and more than 60,000 disabled  people were sterilized.

In the 1930's the placement of disabled people in State Schools grew remarkably due to the financial burdens people had in the Depression.  New born infants were now left in the care of State Schools. The school's became grossly overcrowded and underfunded. Sadly the life expectancy of a child in a State School was 18 years of age.

There was no change in this horrendous situation until the 1960s when President Kennedy raised the awareness of the status of people with developmental disabilities.  He appointed a special panel on mental retardation.  The goal was to improve their care and develop new appropriate programs for them.

The Civil Rights movement also inspired many to think differently about the developmentally disabled/cognitively impaired. The Special Olympics at this time was also being born in the home of Eunice Shriver who was President Kennedy's sister.

Then in the 1970's there was the explosive exposure by newspapers and television of the deplorable conditions at the Willowbrook State School in Staten Island N.Y.

It was a barren warehouse for the cognitively challenged/developmentally disabled.

And it was not unique in State Schools across the country.

Here to the shock of many the children lay naked and untended on the floor in locked wards.

A lawsuit was filed against the State of New York in 1972.

In 1975 a Consent Judgment was signed in Federal Court allowing the residents to be transferred to group homes .

The last children of the original 5000 left the Institution in 1986. http://link.email.washingtonpost.com/r/1BAF0O/A7IF55/4C53BU/Z9QCTK/98LYW/YT/h

This started the movement to de- institutionalize those who were developmentally disabled/cognitively impaired.

In 1970 to the world's first Center for Independent living was opened.

In 1973 The Rehabilitation Act addressing the discrimination of disabled people passed.

In 1975 the Education for All Handicapped Children Act was  passed guaranteeing those with with disabilities the right to a "free appropriate public education." In 1990 the law was renamed Individuals with Disabilities Education Act.

In 1985 The Mental Illness Bill of Rights ACT is passed.

In 1990 the most sweeping disability rights legislation in history The ADA passed.

In 1999 the Supreme Court ruled in Olmstead vs. L.C and F.W.

And here we are: Still fighting but making slow and steady progress.

An inspiration and a reminder of what is possible.

More on Community Living and Long Term Care for the disabled and elderly in my next blog. Meanwhile as promised I leave you with one of the pictures from my garden.                                                                      

         ellie