Monday, August 11, 2014

Why I've Started this Blog

I finally did it.  I helped my son successfully make the transition from attending high school to receiving adult disability services under the Medicaid waiver system.  I did this in the District of Columbia, where I have lived for over thirty years.  Most of what I will write in this blog will be most helpful to other families in D.C., but a lot of it will also help folks in other jurisdictions:  a lot of the fundamentals are the same but the details can differ in important ways. (See my next post on D.C. supports to persons with developmental disabilities.)

I did a tremendous amount of research in the years leading up to my son’s transition out of the school system.  I was frustrated by the fact that too many information sessions in the D.C. area actually focused on the national scene or on criteria, structures and providers in suburban Maryland and Virginia, which helped only up to a point.  I needed to know about the specifics in D.C., so I networked a great deal and learned about other families’ experiences.  Some have already been receiving occasional emails from me on important policy issues or meetings offering the opportunity for the public to weigh in.  Even earlier, some of you joined my (now dormant) Yahoo Group, “DD in DC.” (I would have used this name for my blog but Google wouldn’t let me.) 

There’s a much larger army of people struggling to build a good life for children, siblings or other family members with disabilities in this city.  You’re the folks I want to reach. 

I also know I’m one of the lucky ones, because I was able to dedicate nearly full-time effort to getting my son through his last years of school while building the framework for his future as an adult with a disability.  Three years ago, in mid-2011, I was still working for the federal government, and my son had just turned 18.  Up to then I had planned to continue working until the day he left school and to retire at more or less the same time he graduated, but I was beginning to realize that might not be a good plan after all.  It was becoming clear how much there was to do in order to get him the services he needed, and I could see my husband and I wouldn’t be able to put all the building blocks in place if we both were busy in full-time jobs.  So I took my 31 years and my pension – I said I was lucky – and began my voyage as an advocate for both my son and for others in similar situations. 

It’s been agony.  I know it’s even more agonizing, though, for families that aren’t in a position to dedicate the time and effort I have, so I’m launching this blog in hopes that some of what I’ve learned along the way – and some of the experiences our family will no doubt continue to have – will be helpful to others.  Some of you reading this will know our family circumstances, maybe even know my son.  But my purpose here is to shed light on the process you’ll confront, not to get into a lot of his personal specifics, and I ask you likewise not to undermine my son’s privacy in your public comments.  I hope to help you gain the confidence to advocate for your family member and help him/her to become an effective self-advocate, while also enabling you to understand how the system works now in D.C. and consider ways in which it can be improved with greater public input and involvement. 

My aim is to post new content every two weeks or so, and I welcome comments on my blogs.  It will be helpful to all of us to learn about others’ experiences and perspectives on seeking services in D.C.  Although I’m very well informed, I’m not holding my views up as authoritative, and if I’ve gotten something wrong, I’s important for me and others to know it.  So feel free to weigh in, but in a spirit of information sharing and brainstorming about ways in which we might be able to help move the system forward, here and elsewhere in the country.  A lot of good is being done in D.C., and there’s been great progress over the past few years.  But it’s only through individuals making their views and needs known that further progress will take place. 

The road is very long (never ending, in fact) but it helps to have companions along the way.    



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