Where Do We Go From Here

It has been a while since the last blog post. Part of the problem has been scheduling and some ongoing discussions about where the blog goes from here. To date we have been talking about some important issues related to people with developmental disabilities, their families and colleagues. The topics have ranged from the desperate need to get beyond the grossly outdated institutional model here in New Jersey, to significant changes proposed to the child study teams in the state’s schools, to the specter of increasing the use of growth attenuation against non-verbal human guinea pigs, to the blossoming of real portrayals of people with developmental disabilities across the media spectrum without many of the past stereotypes and misconceptions. All worthy topics for consideration. The feedback from those who have followed those and other blogs has been positive for the most part. Most of it privately conveyed though, not posted as comments unfortunately. We’ve been talking about how to get more voices involved in the discussion. One way is through the comments section so if any of you have something to say about this or past blogs please join in. we are also discussing other ways to increase the visibility of the voices of people with disabilities and families in the public portion of these talks. That has also slowed down the last few posts as we think more about topics and format. But another factor has been at play here. And it is this I want to throw out there for consideration. It seems that, to a certain degree, the robust advocacy movement here in New Jersey has quieted down somewhat in recent years. As I look around the web sites and check the news feeds over the past couple of years I’ve seen less and less squawking about the issues we should always be squawking about. Iowa Senator Tom Harkin recently called again for some progress on employment of people with disabilities, saying he wanted to see the numbers move from where they’ve been stuck ever since I’ve been working with advocates here about these issues. The Senator, a long time champion for these issues, is likely putting on this push in the hopes that there will finally be some real progress before he retires. I hope he’s right but it ain’t gonna happen unless he’s got a big chorus of voices squawking with him. It looks like the Medicaid mentality is asserting an uncomfortable dominance in decision making about where people with developmental disabilities in New Jersey will live and how they will be supported. Don’t get me wrong. Medicaid is the life’s blood of DD services here and across the nation. Threats to it are equally if not more important to watch out for and rail against. But having that program model, still entrenched in the institutionally biased ICF/MR practices of the 1970’s and 80’s, should not be allowed to fill the advocacy vacuum. We need to be talking about that. Keep the light shinned on that disturbing trend. Right now in New Jersey there seems to be a danger of losing hard won gains over the past 20 years or so won by a robust Family Support movement and Self-advocates and their collaborative activities with key professionals to promote a more modern system of community-based supports for the state. Medicaid may be the elephant in the room but the people are supposed to be the trainers. It may be time to pick up the whistles and whips and get the beast back under control. Those past gains are too important to let slide away and will be much harder to get back than to preserve. Education. Transportation. Health Care. Aging. Guardianship. They’re all still out there. From what I’m reading they’re not making the gains along the lines of inclusion, access, quality of life, equal opportunities and such with the same momentum. I know it’s been a long hard stretch these last four or five years. The recession was the biggest economic blow we’ve seen in our lifetimes. It’s hard to make progress on these issues when everyone is struggling with their own life’s challenges. But I think it’s time now to get back up and dust things off and take a look at what’s going on around. I know we haven’t seen too many comments here on the blog and that’s okay. But whether here or with your friends and neighborhoods, or in your advocacy meetings, or in your own blogs and posts and tweets and whatever, I think it may be getting time to start pushing back on some of these trends. Time to start demanding again that people with developmental disabilities get the supports they need in the places they want to live. That they have real prospects for meaningful employment appropriate to their supported skills. That students with developmental disabilities have the right, balanced mix of educational options so they get the best education in the least restrictive environment. That they and everybody else have access to affordable, accessible health care. How about some social mobility (Why Not?)? We know how to do this. We’ve done it before. And a lot has been accomplished. But I think everyone will concede that there is much more to do and, even more importantly, all those past gains to preserve. Anyway, that’s my rant for today. Any takers?