Tuesday, March 10, 2015

Why Friday the 13th Matters

You should have your eye on this Friday, March 13 for two reasons. 

·      One is the deadline for public comment on the proposed D.C. transition plan for compliance with the federal rule on home and community based waivers:

The DDA transition plan for the I/DD waiver is a part of this document, and the DDA plan is what I talked about in my blog on November 24.  This is your opportunity to comment before the full plan is submitted to the federal government.  There was a public comment session last month, but there wasn’t much advance notification.  More information on the federal rule itself can be found at www.hcbsadvocacy.org.  

Send written comments on D.C.’s proposed transition plan to Trina Dutta at the D.C. Department of Health Care Finance, 441 4th St. NW, 9th Floor, Washington, D.C. 20001, or email comments to the email address dhcfpubliccomments@dc.gov.  This plan is going to affect you or your loved one, so it deserves attention.

·       Also, March 13 will be the next session of the Supporting Families Community of Practice, taking place at DLA Piper, LLP, 500 8th Street NW from 9:30 to 3:30.  This session will be focused on supported decision making (SDM), an important alternative to formal guardianship (www.supporteddecisionmaking.org).  As I mentioned in my blog “Organizations You Should Know” last month, D.C.’s own Quality Trust for Individuals with Disabilities recently received a competitive HHS grant to develop a national resource center for supported decision-making.  The head of the Quality Trust, Tina Campanella, will attend the Community of Practice meeting on Friday to talk about and field questions about supported decision making.  I don't know yet whether there will be a dial-in or other remote option for participating in the session, but if I learn there is I’ll share that information.

Attend the Community of Practice session on Friday if you can, and if you have comments on D.C.'s proposed transition plan – last chance!  only three days! – send those comments by the 13th too. 

Sunday, March 1, 2015

DDS: Intentions versus Reality

As discussed in my last blog post, I testified on February 20 before the DC Council’s Committee on Health and Human Services.  Here’s my testimony: 
Although the chair, Yvette Alexander, was very engaged and asked a lot of the right questions, and council members David Grosso and Brianne Nadeau at least attended for part of the time, I was personally extremely disappointed that my council member, Mary Cheh, didn’t show at all and sent no staff.  I was encouraged by Ms. Alexander’s concern about the limitations that current legislation places on eligibility for DDA services, but testimony by Sandy Bernstein of University Legal Services (ULS) and Tina Campanella of the Quality Trust also pointed to the fact that DDA’s intake unit is turning away even individuals who meet the stated IQ requirement under current law.  And Rohini Singh from ULS, along with several parents, testified about the consistent obstacles people are encountering when trying to obtain support from RSA, the other arm of DDS.

DDS director Laura Nuss testified after everyone else, and her head of RSA, Andy Reese, was with her to field questions afterward.  Here is Laura’s testimony:   
Much of what she had to say was positive, and encouraging.  In particular, I appreciated what she and Andy had to say about person-centered thinking and the enhanced priority given to DDA and RSA working in tandem to support people.

Unfortunately, within just a few days of her testimony, I encountered the reality, and the frustration, that we too often encounter as family members in our direct dealings with DDS staff.  I repeated a request I had made to my son’s DDA service coordinator in December to arrange a brief meeting about how best to develop and encourage his job interests – not yet to help him get a job.  We hoped this meeting would include our son’s current service providers as well as his RSA vocational rehabilitation specialist.  Although our son’s prior service coordinator regularly arranged meetings which RSA also attended, and although the VR specialist has expressed a willingness to be part of such a meeting, our son’s current service coordinator refused to do so.  In fact, instead of agreeably stepping forward to set up a time and place, this coordinator instead lectured me in an email concerning my “confusion about how DDS’ systems work.”  Apparently, the mere mention of the word employment, in this person’s mind, automatically means the ball gets pitched to RSA.  

Rather than DDA/RSA coordination, I get a game of “hot potato.”  All this just to get six people into a room?  This is neither person-centered nor a good demonstration of DDA/RSA teamwork.

I said - perhaps too kindly - in my testimony to the council, “DDS needs to expand further its internal training in person-centered approaches to staff in both DDA and RSA, and establish systems and incentives that require both arms of DDS to work together as a team in supporting the people they serve.”  I believe that Laura Nuss would agree with my statement, so why do so many of her staff resist it?  This needs work, and pronto.