When Supporters Need Support

It’s been just over four years now since I began this blog (see “Why I’ve Started this Blog,” August 11, 2014).  This is my 100^th blog post.  So I would have hoped to write an upbeat, celebratory essay – but I can’t.  The events of the past few months have been too difficult.  Difficult times can be learning experiences, though, so I want to try to share what I can.

My son receives supports under D.C.’s intellectual disabilities (I/DD) waiver, but he has multiple disabilities.   He’s complicated, and throughout his life with us we’ve struggled to get him the best available services and supports.  We made the choice when he was about to turn 18 (he’s now 25) not to seek guardianship, and we don’t regret that decision.  Our son is independent in many ways, even though he has a lot of trouble making decisions and understanding the implications of decisions he does make.  He has signed powers of attorney which enable us to be helpful, always in close consultation with him.  In most instances we’ve functioned in the way the District’s new Supported Decision Making is supposed to work, except that he may sometimes say he doesn’t want to be involved in a meeting or that he wants us to sign something because it’s more convenient.  (Fortunately, he’s grown more and more willing to act on his own behalf so these cases have become rarer.)

Recent events have caused members of his support team to take very different viewpoints about his disabilities and motivations.  We’re used to such differences of opinion.  What did come as a surprise, though, was when the head of a DDS implementing agency asked why, given his difficulties, we hadn’t sought guardianship.  I was flabbergasted; DDS representatives were silent.  Unfortunately, in this and other ways, rather than admit to shared challenges, systemic problems, and failings by all members of the team, the approach taken has been to pressure and point the finger at the “natural supports.” 

This points to something that I think should concern all my readers, especially those advocating for their family members.  I believe in the District’s move toward supported decision making, and I’m sure it’s going to mean better outcomes for people who have not had any supports outside of DDS and provider agencies.  Yet our recent experience points toward a troubling tendency.  It’s far too easy, and far too common, for agencies and organizations to make life hard for individuals.  This happens all the time, and usually to those who don’t have as much time, resources, and experience as we do.  Human services agencies need to guard against this, and individuals – people getting support, and sometimes their supporters – often need extra help when it happens.   My page, “Organizations and Acronyms you Should Know” (you can click on it over to the right) lists some of the organizations that can have your back in these situations.

In the end, though, it’s up to DDS to curb this behavior altogether.