The Way Ahead

Some of you may have noticed the following article in the Post last week:  http://wapo.st/1ys00uL.  This seems to confirm that Laura Nuss will be remaining as DDS director, as I’d already heard unofficially.  I still haven’t seen a formal press release from the mayor’s office, but DeBonis usually gets it right.  We also should all be paying attention to the new chair of the D.C. council’s Committee on Health and Human Services, Yvette Alexander.  The budget season is coming up, and on February 20 at 10:00 a.m., she will be chairing the first of two hearings on DDS.  This one is on agency performance, and a later one will be on resources.  Anyone can sign up to testify in person or submit comments:  this is an opportunity to start letting the council know we’re out here and we care.

The viewing of the national Supporting Families Community of Practice webinar and subsequent D.C. discussion took place on January 22.  If you weren’t able to tune in, you can find the webinar at http://supportstofamilies.org/cop/innovations-webinar-series-kickoff-overview-of-the-lifecourse-framework/.  For me, the most important information presented was that, of the 4.7 million American citizens with developmental disabilities, only 25% are receiving services from their state DD administrations (“state” includes DC for these purposes, as we hope will someday  be the case in reality!).  Most of the rest of the presentation had to do with how society as a whole needs to change (and, thankfully, is changing) so that broader supports are available from sources other than state DD offices.  This is a worthwhile effort, particularly in view of the need to continue integrating people with disabilities into our society at large, and the fact that Medicaid and other budgets to fund supports are not expanding much if at all around the country.  However, we can’t lose sight of the fact that state-level services are very much needed by some people not currently receiving them, and we can’t give up on getting those services to them. This is not to say that all 4.7 million Americans with developmental disabilities nationwide would need state DD services, but it’s likely there are quite a few among the 75% not receiving such supports who do indeed need them.

According to my calculations, based on D.C.’s population of about 650,000 and the national rate of 1.58% of the population with a developmental disability, the number of people with developmental disabilities in D.C. could be estimated at about 10,000 citizens, and the number receiving services under the current waiver is under 16% of that, compared to 25% nationally.  This does mean there’s a need for more resources, and we need to be sure the council hears this loud and clear.  However, it’s also true that with only one Medicaid waiver available for people with developmental disabilities, we don’t have a system that’s tailored properly for the different needs of citizens with developmental disabilities in D.C.  So while supports are required for more people, we also need smarter supports in the form of additional types of waivers.

So let’s – all of us – keep the pressure on to address these issues.  Pitch in, folks.

It's You I'm Talking to This Time!

In my last post I offered New Year’s resolutions for the Department on Disability Services.  I hope DDS will take these on board, since much progress is needed.  Progress, though, is a two-way street – or maybe even a four- or five-way intersection – and we can’t just sit back and wait for DDS to think of everything.  

I’ve talked in earlier blogs about the Supporting Families Community of Practice.  D.C. is one of five jurisdictions in the country that got a national grant to explore ways of bringing better supports to families, who nationwide provide the bulk of support for people with disabilities (as we know!).  As the number of people with disabilities increases while government budgets stagnate, there’s a need for a lot more creativity in how we approach support.  The D.C. CoP is chaired by DDS and the non-profit monitoring organization, the Quality Trust for Individuals with Disabilities, with a core group of local disability organizations (I was recently invited to join the organizers as a parent advocate at planning sessions for the public CoP meetings, and attended my first one on December 10.)  Attendance has grown at each successive meeting of the D.C. Community of Practice, but as I continue to remind the organizers, meetings held in the middle of workdays just aren’t always convenient for family members or people with disabilities themselves.  So far there haven’t been good mechanisms for people who can’t attend to participate by webinar or even on a conference line, nor a good means for people to give input if they weren’t able to attend.  There are sometimes technology limitations, but for the CoP, as for many meetings that DDS hosts on other topics, these limitations need to be overcome.

This is where you come in.  There's a meeting scheduled for Wednesday, January 22, 2-4 (441 4^th Street, NW, Room 1107), that will focus on educating attendees about the Lifecourse Framework for achieving systems and individual change.  A webinar will air, followed by discussion among the participants.  In the planning session, I strongly urged organizers to make available an option allowing people who can’t attend in person to participate, and arrangements have been made to allow remote viewing of the webinar:  https://nasddds.adobeconnect.com/familynetworks/, and (888) 407-5039 for audio (you need to call in for webinar audio, apparently).  I urge any and all of you who can to take advantage of this.  Up to now, service providers have not been a part of the CoP, but beginning at this meeting they will be.  It’s important for families to remain the dominant voice in these discussions!

The issues being discussed in the CoP matter to you – how to get providers, doctors, teachers and others to see you or your family member as a person rather than a disability; how to make local service delivery more responsive to people’s individual needs; how to bring our local laws into the 21^st century and get supports to people who don’t currently get any.  But your voice needs to be heard.  Participating in meetings of the Supporting Families Community of Practice is one way.  And whether or not this works for you next week, be in touch with Erin Leveton (erin.leveton@dc.gov) to let her know that it’s a priority for all future meetings of the CoP, and other meetings hosted by DDS, to allow participation by those unable to attend in person.  Also ask for minutes, video, documents, etc., posted on a website or made available by other means to anyone with an interest, starting with you!  This is a good opportunity to advocate and be heard, so speak up! 

DDS New Year's Resolutions

Mayor Bowser has been sworn in, and I’m hearing straws in the wind that Laura Nuss may stay, but still nothing official. Whoever the director is, it’s critical for DDS to follow through on three fundamental reforms that affect the framework for disability services in the District.  The first of these is to meet the remaining requirements needed to close the Evans lawsuit.  Two others, which I’ve also discussed in earlier posts, involve close collaboration with the D.C. council to ensure changes in legislation and adequate budget support:

-          Expand eligibility for services to those who may not have an intellectual disability but who do have other types of developmental disabilities.  As a council member, Muriel Bowser co-sponsored the DDRA, and as mayor she should follow through to see that this set of constituents is well served by the city.

-          Eliminate court commitment for people with a significant intellectual disability, an outmoded and disrespectful practice that no longer exists anywhere else in the country.

Beyond these essential reforms, there are important actions on which DDS and partner agencies within the Bowser administration need to make further headway in the New Year, in order to improve further the city’s delivery of services for citizens with disabilities:

-          Keep systems serving people rather than the reverse

o   Reinforce training in person-centered thinking so DDA staff don’t lose sight of the individual in their focus on paperwork and process requirements.

o   Get person-centered training going in RSA as well.

o   Underscore to service coordinators and other staff the expectation that they should welcome and facilitate involvement in decision making by designated family and other unpaid supports.

o   Streamline overly burdensome financial systems in order to facilitate payments to DDA by individuals’ designated representatives.

-          Increase professionalism and effectiveness of service delivery

o   Attract even more new service providers to D.C. to increase choice and improve the quality of services.

o   Redouble efforts to get provider staff trained in and focused on person-centered approaches.

o   Move ahead on requiring RSA providers also to be qualified with DDA, so that people don’t have to change providers if funding shifts between the two arms of DDS.

-          Make information more accessible  

o   Keep improving the DDS website so that information is easy to find for people who don’t know the technical terminology or processes. 

o   Hold more public outreach meetings outside of work hours.  Whenever meetings take place, enable teleconference or webinar participation and provide a means of follow-up for those unable to attend. 

o   Institute a variety of mechanisms and efforts to bring information to people where they are.

-          Enhance internal communications

o   Keep emphasizing to DDA service coordinators and RSA vocational specialists serving the same individual that they are on the same team.  It’s not happening even though they’re all located within DDS and under one roof.

o   Within DDA, make sure that different departments don’t contradict or undermine one another.  Poor internal communications only create more barriers for people who are trying to apply for services or obtain services for which they have been found eligible.

New year, new administration – an opportunity for great strides to be made on behalf of D.C. citizens with developmental disabilities.  Let’s do it.