Independent Living (Part 2)

Community Participation, Disability, Diversity, Employment, Independent Living, Parents, People with Disabilities 3 Comments »

With the growing dissatisfaction with large state institutions, there has been a vast depopulation of large state facilities between 1990 and the present time. Several states (Alaska, the District of Columbia, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont, and West Virginia) closed all their large state facilities for persons with developmental disabilities. In addition, 27 other states reduced their large state facility populations by more than 50% over this time period.

While there are a number of alternate living situations which we will explore, there is still a need for residential placement for some persons, and for many this is a good solution. Let me give you an example.

Frances lives at Annandale Village near Atlanta Georgia. Her mother, a widow, lives about an hour away. Frances has an intellectual disability and requires close supervision. Her mother realizes that this will be a lifelong condition for Frances, and she wants to be sure that her daughter will have a good life even after her mother dies. They investigated a number of living situations and found that Annandale would meet their needs.

The slogan for Annandale is: “Their community..with our help.” The residents (referred to as “villagers”) form a family-like community engaged in work and play in a safe, sheltered home. Begun in 1969 with 8 residents and a staff of 4, it now has 95 villagers with a staff  of 88, with 15 residents in a special care unit and 15 in day care. The community is comprised of 10 residences, with choices of private apartments, semi-individual apartments, cottages and a 24 hour special care facility.

Annandale has 3 program tracts, based on individual needs. The programs include vocational opportunities, both on campus and in outside business organizations. The villagers market art work, have regular exercise and activities, and cultural opportunities in the area.

Frances visits her mother from time to time, but calls Annandale home. Her mother also visits Frances and has the peace of mind in knowing that she will have that home as long as she lives. You can see pictures of Annandale on their web site: www.Annandale Village.com.

There are a number of good residential facilities throughout the states. I don’t know the cost of the care but feel sure that this is a good solution for some families.

In future blogs we will discover how other families and agencies provide independent living for persons with developmental disabilities.

Let us know what you think and share your discoveries.

Independent Living (Part 1)

Advocate, Community Participation, Diversity, Education, Independent Living, People with Disabilities, Special Education, Teaching No Comments »

It is easy to forget that one method of housing for people with disabilities is still institutionalization in state facilities. Although this arrangement is gradually disappearing, it is still the only choice for many families due to lack of resources, family dysfunction, or other reasons.

Two years ago I was dismayed to learn of an event occurring in a state institution for persons with disabilities. The following article was, and is, my reaction.

Return of an Outrage

After five decades of observing, I thought it was over. I had hoped we would never again see headlines like the one dated March 27 on NPR.org: Abuse at Texas Institutions Is Beyond ‘Fight Club.’ The article described events in which staff members were charged with taking part in staging “human cockfights,” using residents with mental retardation for staff entertainment. Chronicled on a lost but retrieved cell phone, the evidence pointed to more than a year of staged late-night fights, some as recent as this past January, at the Corpus Christi institution.

My rekindled anger took me back to the 1960s, to revelations that changed my life. The first experience was made more real to me because of my son Billy, who has Down syndrome. I had just begun pursuing my goal to become a special education teacher. I wrote:

During that first summer, my class visited various facilities supposedly designed to educate children with mental retardation. A major event was the trip to Partlow, a residential institution operated by the state of Alabama. . . As a group, we walked into one expansive barn-like room, furnished with two long benches facing each other, no other furniture in the room, no curtains on the cloudy windows, and absolutely no stimulation of any kind. I stopped in the doorway, mesmerized by boys appearing to be around the age of ten or twelve, hands by their sides, staring blankly about them. This image was my nightmare for months to come, an image still present in my mind. I was so struck with the horror of “nothing to do” that I swore to myself, “That will never happen to my little boy.”

The second event occurred as I was progressing in my studies in mental retardation; I was shaken and outraged by the disclosure of conditions at Willowbrook, a Staten Island institution for children with mental retardation. Not only were children abused and living in squalor with little medical or mental health care, some of them were reportedly used as test cases for hepatitis studies. The nation as a whole was appalled when a young investigator, Geraldo Rivera, went into the institution with a hidden camera and revealed the unthinkable conditions at Willowbrook.

The Willowbrook expose was followed by a book written by Burton Blatt and Fred Kaplan, entitled Christmas in Purgatory: A Photographic Essay On Mental Retardation. As part of a research project at a Connecticut facility for persons with mental retardation, this book presented explicit photographs of residents being treated “less humanely, with less care, and under more deplorable conditions than animals.” In the Introduction, Dr. Blatt stated, “There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.”

As a student, I felt sure that these dramatic disclosures would demand that residential institutions be carefully monitored and the persons living in them treated with dignity and kindness. The sad truth did not bear out my optimism.

When I became a professor in special education in the early 1970s, I took a group of students to visit a residential institution not far from our university. Although this was considered a model facility by many, my students and I witnessed an appalling procedure. As we were touring the grounds, we observed a fenced-in area where a large group of naked young men were being hosed off by attendants. We were appalled at the lack of dignity afforded these residents.

Almost half a century later we are still confronted with atrocities perpetrated on those persons most vulnerable in our society. Sure, in response to the article concerning abuse at the Corpus Christi institution, Texas state officials have announced steps to prevent more abuse. They intend to add supervisors to evening shifts, install security cameras in public areas at all 13 state institutions for people with intellectual disabilities, and to “continue to take swift and immediate action when abuse and neglect is reported.” But we know this does not address the real problem.

Originally placed in out-of-the way places, residential institutions were designed to protect the residents as well as the community. Such isolation seems to breed neglect and abuse that go unnoticed by citizens at large. The claim that this practice is less expensive for the state is not a valid reason for the continuation of such large, unmanageable facilities.

I have felt encouraged by the national trend leading to group homes, supervised apartments, family-supervised living, and other arrangements for people with developmental disabilities to live in communities and enjoy the rights of all citizens. In districts where this occurs, the population as a whole grows in many ways. The inclusion of persons with disabilities adds to the sense of diversity that makes us interested in each other and helps us develop sensitivity to the worth of all individuals.

The Texas incident reminds me that we must all be advocates for those less able to advocate for themselves. As advocates, we should be aware of past injustices, learn from our experiences, and be proactive in seeing that the past will not be repeated.

In future blogs we will examine alternatives to institutionalization. We will have several guest  bloggers who will describe solutions that offer favorable living situations for their family member who has a disability.

What solutions have you found or learned about? What questions or concerns do you have? Share with us!

Anniversary of ADA

Disability, Employment, Independent Living, People with Disabilities No Comments »

Twenty years ago the Americans with Disabilities Act was enacted by the U.S. Congress. Without the law’s enactment my husband, who had recently become dependent on a wheel chair, would have been unable to go out to lunch, go to church, go shopping or enter a number of buildings. Without the help of ramps, curb cuts and building accessibility he would have been home bound.

Disability is defined by the ADA as “a physical or mental impairment that substantially limits a major life activity.” The four goals for public policy for people with disabilities were defined as equality of opportunity,  full participation, independent living and economic self-sufficiency. As Public Law 94 142 was designed to provide “free and equal public education” to all children, the ADA expands equal rights to people of all ages.

We have grown accustomed to interpreters for those with hearing impairments, braille instructions on elevators and designated parking areas for those with physical disabilities. However, it appears that we are falling short of the stated goals when we look at the poverty rates, unemployment and underemployment figures, and lack of access to cutting edge technologies.

President Obama marked Monday’s 20th anniversary of this landmark anti-discrimination law for people with disabilities by promising to boost government efforts at recruiting, hiring and retaining people with physical and mental limitations. The president’s White House adviser on disability policy said advances in technology make revisiting the law a necessity.

In future blogs we will look at various needs and opportunities in housing, employment, and full participation. We welcome your questions, suggestions, and comments.

Have you, or someone you know, experienced discrimination in the workplace, housing accommodations, or participation in normal activities?

Unique Challenge?

Adults with Down Syndrome, Down Syndrome, Family Challenges, Independent Living, Parents, Siblings No Comments »

Billy is a hoarder. We always called it a “pack rat” and thought it was somehow connected to his having Down Syndrome. I located an entry in my journal dated January, 1999.

John is on the way to build shelves in Billy’s study for his media center. We have worked for weeks to empty this tiny room with 17 years’ collections in it.

When we moved two years later, much of Billy’s “stuff” mysteriously disappeared. However, we moved into a larger house and like a carp thrown from a fish bowl into a pond, Billy’s stuff adapted to the size of its environment. The TV Guides, 8 track tapes, and xeroxed copies of Jane Fonda were no longer there, but the system grew to include video tapes, Peoples Magazine, and DVD films. Again, with the help of Billy’s siblings, we sought a solution to the unwieldy collection.

Tom spent most of last week converting a rarely used garage adjacent to Billy’s apartment into a new media center. It contains many shelves, a place for a spare bed, niches for Billy’s desk and his stereo player, and a spot for his exercise machine. In his usual manner, Tom created a beautiful room, professionally built and thoughtfully made to accommodate Billy’s treasures. Needless to say, Billy is thrilled with the results and is moving slowly to make it a true media center. Mary hauled trash (my term), purchased materials, cooked meals, and was on hand for any errands.

Ironically, in Sunday’s newspaper, I noted that one of the TV stations listed about four hours of programs about hoarding. I watched some of the stories and was amazed at the gravity of this compulsive disorder. Apparently there are around three million people in the United States who are living in dangerous, unhealthy situations created by hoarding. In the recorded versions the treatments required a clinical psychologist or certified organizer plus dozens of vans to haul away things people had saved. In one situation it was revealed by the children that before their father died he had for years removed his wife’s collections on a regular basis.

I no longer regard Billy’s disorder as a “unique challenge.” The unique aspect is the remarkable and loving help from his siblings.

Billy’s new Media Center takes shape.
Our family’s greatest gift is the ability and desire to work together.
There was excitement, some tension, and a few cross words.
But mostly there was love.

Please share how you deal with your unique challenges.

EXPECTATION: Disability Employment Awareness

Community Participation, Inclusion, Independent Living, People with Disabilities 1 Comment »

Did you know? October is National Disability Employment Awareness Month.
Did you know? In this country there are 54 million people with disabilities.

In 1988 Congress designated each October as National Disability Employment Awareness Month. President Obama has issued a similar proclamation, using the occasion to announce several new initiatives.This is an effort to educate the American public about issues related to disability and employment The motto is:

Expectation + Opportunity = Full participation

I am reminded of a recent conversation with a young woman who teaches 7th grade math. Knowing my interest, she told me that she has in her regular classroom a girl who has Down syndrome. During a conference the girl’s mother asked, “What do we need to teach our daughter so she can work at McDonald’s?” The teacher responded indignantly, “She won’t be working at McDonald’s! She is one of my best students and she will have many opportunities.”

Now, that’s expectation.

Check out who we’re talking about:

The newly launched Campaign for Disability Employment has produced a public service announcement that showcases the workplace skills and talents of people with disabilities. View it yourself and help spread the word about this important campaign by clicking here.

Do you have experiences and observations about people with disabilities in the working place? I would love to hear from you.

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