“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, June 09, 2010

AAIDD Providence

I am currently at the annual meeting of the American Association on Intellectual and Developmental Disabilities. I am the incoming president of the Religion and Spirituality Division of the organization and have been enjoying interactions with old friends and have been making some new friends.

Today, I attended a session by Dr. Robert Schalock, a very important researcher in the field of disability. He was the moderator of a session about the Intellectual Disability: Definition, Classification, and Systems of Supports (Eleventh edition) The AAIDD is the organization which defines intellectual disability, which is no small task as it impacts people in terms of receiving services and legal responsibilities. I found it a very informative session, and those in attendance were a "who's who" of the field of intellectual disability for the past 20 years or so.

Two very positive things jumped out at me from the meeting actually 3. First, I plan to purchase the book noted above. I think it is critical to understand the direction the field is going in, and particularly relates to my interests in policy development for the church. Second and related, there seems to be a movement in the definitions towards more of a community focus, and a understanding of intellectual disability on the basis of services needed versus past notions of assessment and identification. This has always seemed to be an issue. If I label you intellectually disabled, that really tells me very little about who you are in really any way. However, should I describe the supports or services you need, I have a better handle on your needs professionally, and I at least have the potential of moving away from giving you a label that causes you to be devalued by society. It is a positive move and I raised my hand and told them so!

Thirdly, attached to the definition are what they call 5 assumptions. I will list them all here at a future date, when I have my copy of the book. But assumption #5 I did copy down. Here is what it states,
With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve.
I love that, but recognize that much of those kinds of efforts cease after one leaves school. I have clearly seen this principle in effect in a religious setting. Spiritual understanding and its effect on behavior, language, faith development has been at times staggering to me. I am ashamed to admit that I have had expectations that have often been beautifully exceeded by friends of mine with disabilities. I will often look at Kathi at our Light and Power class, at times holding back the tears at the spiritual insights of people, who as adults, continue to grow and develop as human beings.

I also raised the issue (when I raised my hand) that I feel that we are a bit stuck with group homes being as they are, in that we seem to be at a place, similar but not the same, that we were with institutions in the 70's. People are in the community in little institutional homes rather than in large institutions of the past. They are still socially isolated, they are still controlled and lacking in freedom, but it is individually on a smaller scale (although taken together, it is a scale of great magnitude). Dr. Schalock stated that we don't need another deinstitutionaliation movement, but I am not sure I agree. I think we do need another de-little-institutionalization movement where people gain freedom while in group homes. It is the next phase, I think, and churches are an integral part of facilitating the next phase. The Christian community can be both advocating for change, and also be the provider of real lives for group home residents. Let us have access to isolated people and let us bring real life to them. I honestly think that is what we have to offer.



Raymond Winterz said...

Dr. McNair I believe that you are correct with your general idea of ending institutionalization but I wonder how it could be done? I believe that if we let disable persons into society it will empower then to be more independent and certain social stigmas will be dispelled but it can be dangerous. I believe that social services would have to shift focus in order to educate disable persons about daily life in the world, with an emphasis on protecting oneself from others.

I do not think that disabled people are the issue with integration, I believe it is the "normal" people in the world that are. Their are certain people who would take advantage over their own mother of they had the opportunity, whats to stop them from taking advantage of disabled persons?

I think that we are still a ways away from complete social integration. however keeping disabled persons isolated like they are does nothing for society. Many of these people are smart and capable at contributing to society in social, artistic, and productive ways. Not empowering the disabled to be independent hinders us all.

Anonymous said...

I love how you are always able to look at the big picture unlike other people at the seminar seemed to. I too agree that although things have gotten better since the 70s there is still room for improvement. The community needs to be involved. Ultimately it seems that some division of each state needs to become more involved and make it a priority to not just provide transportation for people with disabilities but to provide social contacts on a regular basis. After the interviews with your special friends it was quite concerning when my group would ask each of them when they were last taken out somewhere by family or friends and their answer was very delayed. Besides church, it had been a long time since they were involved in a social activity. This is not a healthy way to live. Not only can we help people with disabilities learn and grow but we can learn and grow from them as well.