Let’s face it – this is what we all want to know. Whether your loved one is among the 700 or so people receiving services under civil commitment, or one of the great majority in D.C. who aren’t, we all want to know: Who cares? Who’s watching out? Who’s keeping an eye on the service providers? I believe persons with disabilities have the right not to have a judge deciding for them what services they need. But I worry too, and I realize the less your loved one is able to communicate verbally his or her own needs, the more you worry about who is there – who will be there – to make sure DDS is doing what it should do.
These aren’t easy issues. Families and friends across the country are grappling with this every single day. My husband and I have no other relatives in the D.C. area, and we work constantly to build our son’s circle of support here so that there will be people around who care, who will be paying attention, when we no longer are here for him. Here are the things that concern me most about DDS services, today, and what I’m trying to do about them so things go better in the future:
- Turnover. What we all want is for support personnel and decision makers to know, really know, the needs and preferences of the person we love who is in their care. Fortunately D.C. requires providers to pay a living wage, but the “churning” of staff still sometimes seems endless. This is true in provider organizations, where it affects the quality of record keeping and how well DSPs know and understand our loved ones. But it’s also true inside DDS: our son has been receiving DDA services for only 1 ½ years, but already he has had three service coordinators. (Refer to the page of acronyms over on the right to help you understand some of the abbreviations I'm using.)
- Poor information flow. A lot of work has been done, especially in the State Office of Disability Administration (SODA), to try to make more information available to the public, through briefings, the DDS website (www.dds.dc.gov), and in other ways, about new policies and directions in which DDS is heading. But often the folks we deal with directly are the last to know: they just don’t seem to get information systematically from the SODA, or from DDA management, about new initiatives or policy directives. Sometimes provider agency personnel know before service coordinators do.
- Unclear systems. It often seems the answer you get to a question changes depending on who you’re talking to. In some ways this may be due to poor information sharing, but I notice it happens all the way up the chain to senior management. Being a squeaky wheel can help get results in any system, but too often with respect to DDS it seems to BE the system. Reliable, understandable regulations and procedures, with clear criteria for exceptions, would be a fairer approach. I think things are moving in this direction, but often that movement seems far too slow.
- Lowest common denominator. The only way I’ve been able to get the kind of day programming my son needs is to push and push, and make arrangements myself for classes and volunteer opportunities. There’s an inertia in the system that discourages creativity in tailoring support to individual needs and interests. What’s worrisome in this regard is that DDA is now pushing all providers of day programming to become more “community-based,” essentially requiring them to keep people offsite to the maximum extent possible. People have different preferences and tolerances for going from library to rec center, rec center to McDonalds, and for some the obligation to be out in the community all day long is a source of great anxiety. Unless it’s implemented in a smarter way, this “community-based” push is going to conflict more and more with another stated goal, person-centered programming, which should mean individualization and choice if it means anything.
- Employment. “Employment first” is a good slogan. I even believe it’s a sincere goal. But here again, DDS - both RSA and DDA - needs to show a lot more creativity. Day programs need to help people identify their particular skill sets, help them address the challenges standing in the way of competitive employment, and bring them into contact with potential employers. At the same time, RSA needs to get together with local businesses and come up with plans that make more diverse employment opportunities available. Relying on the federal government, Project Search, and grocery stores is not a plan well suited to everyone.
You’ll notice that my concerns aren’t mainly about health and welfare. A lot of effort has gone into establishing monitoring systems in recent years. DDS has beefed up its own monitoring and oversight of provider performance – in fact as I write this, provider certification reviews (PCRs) are taking place. University Legal Services (ULS) has direct responsibility for investigating accusations of abuse or neglect. The Quality Trust has been monitoring the quality of DDA and provider service delivery for many years, and with the impending closeout of the Evans case it is assuming oversight for those individuals as well. The D.C. council, too, keeps watch over DDS operations, and will conduct hearings on DDS performance on March 10 (put it on your calendar!).
Still, it’s true that D.C.’s services for people with disabilities – as in most of the rest of the country - don’t operate in very creative or imaginative ways to help people make progress and realize their personal potential, unless there’s someone pushing hard from the outside to make them do so. Keeping my own information records in order; making sure the service coordinator and agency personnel know about new initiatives and regulations; seeking out and arranging for concrete opportunities: these are some of the things I do routinely. And yes, I worry about who will do all this when I’m not around. This is what makes me a woman in a hurry to see improvements, to help my son learn to advocate for himself, and to cultivate local friends and supporters who – with out-of-town family - will continue paying attention even when we no longer are here. We all need circles of support, and these make the very best watchdogs.