Independent Living (Part 2)

Community Participation, Disability, Diversity, Employment, Independent Living, Parents, People with Disabilities 10 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!

SHOUT!

Adults with Down Syndrome, Community Participation, Diversity, Down Syndrome, Education, Inclusion, People with Disabilities, Uncategorized 4 Comments »


While equal opportunity employment is a vital element in the inclusion of persons with disabilities into the community, there are other important ways to help accomplish this goal. An organization called SHOUT (Students Helping Others Understand Tomorrow) makes a concerted effort to introduce diverse groups of people to selected high school students.

SHOUT is sponsored by the Kingsport Chamber of Commerce and is designed to inform future leaders of possibilities for service in the area. For several years, Billy and I have been asked to meet with the group on Diversity Day, one of the five categories in the program. One of the stated goals for this session is: “To initiate, foster, and promote an understanding and appreciation for all people and their unique perspectives and contributions to the world.”

My thrust is the development of attitudes from tolerance to acceptance to celebration of diversity. Billy shows his slides, pointing out the normalcy of his life and the importance of his family. His real message, however takes place during his interaction with the students at lunch time and after the program. Initially reticent, they find that he is easy to talk with and fun to be around. Evaluations referred to it as “an eye-opening day,” stating, “Billy was awesome; it was definitely an amazing experience.” In planning their graduation ceremony, the students asked that Billy hand out their certificates. On the appropriate night Billy, dressed in suit and tie, shook hands and gave out certificates to all the students. At the end of the program, students write letters to thank the session leaders. One letter addressed to me read:

We were very privileged to have you speak to us on Diversity Day. Your presentation was a touching and heartwarming experience. Not only did you show us that you should not be ashamed of or try to hide your differences, but you urged everyone to CELEBRATE what makes them special. I think nearly everyone can agree with you that Billy has a way of teaching people that no one else is capable of. He has an extraordinary gift and that is something to celebrate.On behalf of everyone in the SHOUT program, thank you. We were blessed to have you!

It is a joyful opportunity to be involved with this group – future parents, professionals, and employers.

Do you know of community organizations that encourage and promote the inclusion of people with disabilities? Is there potential in any of your social organizations to develop such ideals?

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