WAbilities will not publish this letter

My submission to WAbilities (the Washington State Developmental Disabilities Council) blog.  This will not be approved for publication due to the fact that I clearly support a continuum of care and choice for our citizens with developmental disabilities.

I was in a conversation recently with the DSHS Secretary and others from DSHS.  I was basically told that they can make miracle happen – not only can they make my son with disabilities “normal” by moving him and others with disabilities to group homes (SOLAs) but they can do this, give each person all the supports they need and SAVE MONEY at the same time.

Now I don’t have a clue where they are from but it’s not reality.  I was told that when my son or others like him move to a group home they will be able to mow their grass, do their laundry, do their dishes, cook and clean – just like other “normal” people.  I would really like to know how they will achieve this.  Given the fact that my son has no manual skills or desire to do these things or even know that they might need to be done now, how will moving to a group home suddenly make a miracle happen?

My son is not normal – never was and never will be.  Regardless of that – He’s PERFECT and truly loved.  I have no desire to force him into a mold in which he will never fit.  I believe in allowing him to use his skills and abilities and build on what he can do – not force him to do things that we (as “normal” people) think he should do.

Let’s use our time, energy and money for actions that will benefit the most people – forcing our most vulnerable, highest acuity and highest need citizens with developmental disabilities into situations in which they are not able to be safe, healthy and happy is not beneficial to anyone.

These are questions I have with regards to Self-Advocacy – a movement which I truly support but it does have its limits.  I hear many self-advocates talk about the desire to “own a home, have a job (not at McDonalds or bagging groceries at Safeway), freedom to go out” and other activities.  For many, these desires may be attainable.  There is also a segment of our population who never think about these desires or would not care about them if they did.  Where do these people fit into the “Self-Advocacy” movement?  I have asked this over and over and no one has been able to give me any response. From what I can ascertain by the non-answers is that these people are ignored and forgotten.  I can not do that – they need to have people who can advocate for them too.

For my son and many like him, life is wonderful as it is.  He is fully able to make the choices that matter to him and that he values, he is very active in his community that he grew up in, his church, frequently goes out shopping and to various stores, is very active in the Seattle Parks and Recreation Specialized Populations programs, participates in Special Olympics and is very connected to his family.  He also lives at Fircrest.

We requested he be moved to Fircrest from the hospital (January 2009) but were told by DDD there was no space for him there. We looked at several group homes but quickly realized that the care in those homes would not be adequate to safely care for him and there were none that were close to our home. The only other options offered by DDD (at the tender age of 14) – we could call the police rather than try to hospitalize him again, we could wait for some type of respite to open up for him, we could be put on a waiting list for out-of-home placement since there was no facility in our state which could accommodate him.  We already had in-home supports but they were not adequate for his increasing needs.

We did the best we could, brought him home with a medication adjustment and luckily had the expert care of a physician who I could talk with directly in times of crisis in attempts to manage him rather than calling the police or ambulance to whisk him to the hospital again.  We only survived 9 more months of that though before our family disintegrated.  Our son was admitted to Frances Haddon Morgan Center in September 2009 – a move that clearly saved his life and ours.

This past year (July 2010) we were able to bring him back home to his neighborhood in which he grew up in, is familiar with and is close to his family and friends.  It is wonderful being close to him, being able to see him often and knowing that he is safe and well cared for in his community.

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