Friday, August 22, 2014

Let's Talk about the Good News

This is big:  our son is doing well.  He likes his living situation and the staff who support him.  Since he only got out of school and started receiving support from DDA two months ago, that’s worth celebrating.

The organization that supports him in his apartment is new to D.C., though well established elsewhere, and he was the first person here for whom they began providing in-home services. Initially they were putting their local organization in place while starting to provide his services, and that made things bumpy at first.  It also came as a shock – after my husband and I had been so involved in arranging for him to receive services, selecting providers, and finding the right living situation for him – to find that our input was initially not expected nor, in a way, desired.  The system doesn’t really yet have a way to comfortably accommodate the involvement of family members or other unpaid individuals on whom the person relies, even in a situation such as ours in which our son had signed Powers of Attorney inviting our help with medical, financial and related decisions.  It’s taking time to work this out, and there have been some growing pains for sure, but there’s been progress on this front and overall his provider has proven flexible and well-intentioned in trying to make things more inclusive.  With plenty of goodwill on both sides, things have smoothed out considerably over the past two months. 

We believe our son has actually benefited from having a provider organization that, being new to D.C., isn’t so set in its ways.  And they’re only here thanks to the fact that Laura Nuss (see my last blog post) has actively sought to inject new blood into D.C.’s disability services environment.  She’s courted good providers from other jurisdictions and convinced some to set up operations here.  This is quite an accomplishment, since D.C. until recently hasn’t had a reputation as an easy place in which to provide services for people with disabilities.  It’s because of her determined efforts, and those of her predecessor Judy Heumann, that things are turning around and folks are beginning to take notice. 

Our son is also benefiting from a new type of daytime program, Individualized Day Supports, or IDS.  Unlike standard work or day habilitation programs, IDS allows for more variety, tailored to a person’s skills and interests.  It was originally conceived with older people in mind, since many of those whom DDA serves are aging and more in retirement mode; but it’s also well suited to young people like our son who haven’t really thought through what they want to do and need more time to sort things out.   With IDS, the provider develops a Community Integration Plan based on the person’s interests, and a community navigator accompanies him/her to activities geared toward accomplishing those goals.  For IDS our son’s provider is a longtime D.C. organization that sees IDS as an opportunity to try some new strategies with the people they support.  We’ve worked closely with them to ensure his schedule offers some challenge and room for growth, so he’s been taking some classes as part of his day activities.

These new providers and new programs are some of the good news for everyone in D.C. just now.  There’s a lot of progress to be made, but also a determination as long as Laura is in the job to maintain forward momentum toward a more “person-centered” system of service provision.  We’ve encountered many challenges up to now in our dealings with the Developmental Disabilities Administration, and we expect many more, but most of the problems are those of a bureaucracy that’s trying to catch up with change.  This is much better than dealing with an organization that’s trying to block you at every turn.  So when I’ve encountered roadblocks, I’ve advocated as forcefully as I must, but gritted my teeth and forged ahead in the knowledge that DDA leadership is focused on a goal that I fundamentally share. 

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