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06 July 2013

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mamacate

Well said! Thank you. I hate that it is often read as making excuses for murder when parents note the lack of services and supports as factors in cases where parents murder disabled children. It doesn't justify anything, but the event of those murders is a moment when public attention is momentarily pointed at the experience of families who need "superhuman" capacities to provide adequate care.

When I read that services were refused, I have to wonder. When we were seeking services (desperately), many agencies wanted to note us as refusing services, and in fact I suspect many did, despite the fact that I was extremely careful to stress that we continued to seek services from them, described my child and his behaviors, and repeated my request for services given his profile.

An example: we sought respite from an agency that had approved him for services, but provided nothing but occasional meetings with an untrained case manager who was empowered to provide nothing but advice (note untrained--right out of college).

We requested respite from this agency, a service they are state-funded to provide and for which my son was eligible. We were told he would be put in a foster home for respite, and if we wanted him to be cared for in our home by a caregiver we had trained, we would have to have our home approved as a foster home and the caregivers would have to go through a three-day unpaid foster care training, then they would receive $50 per day for providing the care. I said that this was not practical since no one would provide 24 hours of care for $50, and was told I was refusing services. I responded that I was not, and I requested that they seek a respite placement within the foster system for my son given his behaviors. I had already been told they didn't have one, and I asked what would happen next. They said they would look again and let me know.

I did not receive a call back, but I did get a letter in the mail a month later terminating my son's services with that agency (a state subcontractor), with no explanation why.

So when I read that a family refused services, (which, when it's from DCFS in my state, may involve voluntary relinquishment of some portion of parental rights, a scary thing to do with an agency as dysfunctional as that one), I put it in context. Everything in my own experience makes me think they were unable to find appropriate help.

I'm not saying that justifies murder. I'm just saying it's a huge problem.

autismvox

@mamacate,

Agreed on all points. So often 'respite' has been mentioned to us. On looking into it, we have quickly encountered the same issues you note about finding qualified staff, not to mention training them -- a lot of bureaucracy and, having seen some share of programs and services for older individuals with disabilities in New Jersey, I cannot say I would feel comfortable at leaving Charlie with them.

Many from physicians to educators have said something along the line of 'there must be something out there, I'm sure it's fine' -- I would say, they have yet to do some research .

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