One Year In: Policy

Nothing moves fast in any bureaucracy, as I should know from my years in the federal government.  When it comes to addressing the needs of D.C. citizens with developmental disabilities I can get pretty impatient, but fair’s fair and it’s important to recognize where progress is occurring.

Predictably, DDS has made most headway on things that it could do without a lot of outside approvals.  Some significant accomplishments I’ve noticed: 1) DDS is about to issue new guidelines on how it will interpret the current IQ cutoff for DDA eligibility, which could have an impact on those who tested slightly above 69 before age 18.  2) DDS is pushing to expand people’s civil rights, by getting a bill introduced in the D.C. council to roll back the requirement for legal commitment (fingers crossed for council action) and by working with the Quality Trust, Developmental Disabilities Council, D.C. superior court and others to popularize alternatives to guardianship.  3) The Supporting Families Community of Practice (http://dds.dc.gov/page/dc-supporting-families-community-practice), which DDS co-leads, has successfully attracted new people and families, provided training on person-centered tools, and kickstarted efforts throughout the D.C. government to make ours a more supportive community for citizens with disabilities and their families.  4) DDS has made visible progress in providing more and clearer information on its website and elsewhere, arranging for those unable to attend to call in to some of its meetings, and exploring more weekend or evening meetings (let erin.leveton@dc.gov know if you like this idea).

Some things do require federal approval, and after more than a year of waiting, DDS has finally received approval from CMS for a large package of important amendments to the I/DD waiver (if you’re having trouble with the alphabet soup, see the page “Acronyms You Should Know” to the right of this blog post).  This has been a heavy lift, and now that it has come through DDA should be able to move ahead with developing the new and much-discussed Individual and Family Services waiver, joining DDA and RSA forces to help young people explore career paths and develop skills, and streamlining onerous documentation and other requirements that can undermine the goal of person-centered planning and implementation.   Laura Nuss and her new acting deputy for DDA, Jared Morris (thomas.morris@dc.gov) are promising to launch a DDA Advisory Council that will play a more meaningful role than the old Advisory Committee.  I’ve put in my application, and urge you to do so as well by contacting Alison Whyte at alison.whyte@dc.gov.

You may wonder why I haven’t said anything yet about closing out the Evans lawsuit and broadening eligibility for DDA services.  Laura Nuss isn’t going to forget Evans, and she was so confident about getting over the final hurdles that she didn’t put any new money into this year’s budget for Evans compliance.  On eligibility criteria, following the April budget hearing the council asked DDS for a study of the number of people with developmental disabilities and the costs associated with expanding services.  I understand that survey is under way and should have its findings by December.

One Year In: Personal

Even without a child in school anymore, fall is one of my busiest seasons.  But although I haven’t posted to my blog in a month, I’ve been thinking hard about how things have unfolded over the past year.  It’s actually been over a year - 16 months since my son began receiving services from DDS and 14 months since I started my blog.  But even if my timing’s a little off, the point is that it’s time to take stock.  In this blog post I’ll talk about where things stand for my son and our family; in the next, I’ll talk about policy issues.  And sometime soon I plan to post a page of acronyms to help you wade through the alphabet soup without having to go back to earlier posts.

So, on the personal front:

-          Supported living.  You know if you’ve been reading my blog for a while that our son recently transitioned to a new provider agency for his home support when the agency we’d chosen in 2014 sadly left D.C. after a little over a year (“Sometimes It’s Personal,” 8/4/15).  It’s too early to make a firm judgment about the quality of his ongoing care, but I can say that the promise of continuity hasn’t come true.  The new organization has changed the entire management team overseeing his apartment and his ISP, including one direct support professional (DSP) who was especially close to him.  Fortunately a few of his DSPs remain the same – for now – although this is small comfort since it could change anytime, as we’ve just been reminded.  Still, we believe he’s safe and has staff who mean well by him, and he has a reasonably compatible roommate as well.  We just wish we could rely on the promises made by both DDS and the new agency about a "seamless" transition.

-          Individualized day services.  IDS was a new option last year when our son began receiving services in DC.  Our experience is a clear demonstration of the difficulties this day program has had in delivering for the people who’ve chosen it.  It was originally intended as an alternative to work or other fixed-location day programs for people of retirement age who still wanted to be occupied productively during daytime hours.   Increasingly it’s also been chosen by people such as my son, who are transitioning from school and still in a period of exploration befitting their age.  Over the past year his IDS programming has helped our son get to know the D.C. community again, and better, after a four-year absence.  He has had a caring and sincere community navigator, and has sometimes had a companion who has obliged him to develop skills of compromise and collaboration.  However, our son needs an individualized but structured program of day supports, and the only structure he’s had so far has come from the courses our family has identified and enrolled him in.  Given the number of daytime opportunities available, and our own efforts to bring options to the provider agency’s attention, we’ve been hard pressed to understand the lack of creativity shown in developing an individualized program to address those needs.

-          Skills development and employment.  On this subject I refer you to my earlier post (“It’s About Work,” 8/21/15) which describes our discouraging personal experience with trying to cut through the bureaucracy and get the support our son needs to prepare himself for competitive employment.  A ping-pong match between DDA and RSA isn’t the way to help a person move forward in life.

Someone who’s been a very good friend to our son and our family told me a few months ago, “You don’t know it yet, but you’re at the beginning of a long process.”  I begin to understand what she meant.  But I’m an impatient person, and I’m continuing to push.  I hope you will, too.