Supporting Families Community of Practice

On several occasions I’ve mentioned the Supporting Families Community of Practice (CoP), and in my last posting I said the CoP’s next meeting would be on March 13.  I was out of town for that meeting (also the reason it’s taken me so long to write a new post) but there was a lot on the agenda that’s of interest so I’ve caught myself up on the content and wanted to highlight a few things that deserve your attention:

-           Family Support Council (FSC).  DDS (alison.whyte@dc.gov) is seeking applications for membership on this new Council, which is being set up to ensure that D.C. government agencies are held accountable to citizens with intellectual and developmental disabilities and their families.  The CoP was set up in 2013 under a grant from the Department of Health and Human Services, and the FSC is being created to make sure there’s a continued voice for family concerns when the five-year grant comes to an end.

-           No Wrong Door (NWD).  Since October of last year DDS, in collaboration with other D.C. government agencies that deliver long-term support services to people with disabilities, chronic illnesses or other challenges, has been developing a three-year plan to streamline application processes and develop a customer-oriented entry point and person-centered procedures for all citizens in need of these services.  If the District gets a follow-up grant it will start implementing the NWD plan this fall.  If you’ve tried to figure out the world of service provision in D.C., you’ll know that this is really worth doing, so provide feedback and ideas if you have them, to Erin Leveton at erin.leveton@dc.gov.

-           Supported Decision Making (SDM) Work Group.  In close collaboration with the Quality Trust, the CoP is setting up a work group to examine D.C. laws that may interfere with the ability of people to have family or friends involved in helping with their decision making.  This work group will have a short time fuse – the plan is for it to report in six months.   Either Erin (see above) or Rhonda White of the Quality Trust (rwhite@dcqualitytrust.org) can tell you more about this effort.

I’m told that DDS is going to start posting minutes and other materials from the CoP meetings to its website (www.dds.dc.gov) and when that’s happening I’ll let folks know.  In the meantime, I’m attaching a number of handouts from the March 13 meeting, at this link:

https://drive.google.com/file/d/0B489LE-2ltOgc3BaY3lTQTVQRGc/view?usp=sharing

The next meeting of the CoP will likely be in June.  The plan is for it to focus on community supports and organizations, and ways to ensure such information is regularly available and updated for those who need it.  It’s also possible that there will be a keynote by someone well placed in the new administration, presenting an opportunity to sensitize Mayor Bowser to the concerns of D.C. citizens with developmental disabilities.  Stay tuned to the DDS website and you’ll hopefully see information on the June meeting there by next month.

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:

      https://drive.google.com/file/d/0B489LE-2ltOgVk1LaDBIWkNLSWM/view?usp=sharing

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 4^th St. NW, 9^th 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 8^th 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 13^th too. 

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: 

https://drive.google.com/file/d/0B489LE-2ltOgN0IwcXBhVVhFd2c/view?usp=sharing

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:   

https://drive.google.com/file/d/0B489LE-2ltOgOWQ4UGt6MVBNNUE/view?usp=sharing

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.

Organizations You Should Know

You know what the Department on Disability Services is.  And you know that DDS, either through its Development Disabilities Administration (for waiver services) or through the Rehabilitation Services Administration (for employment-related services), contracts with organizations that directly provide those services (“providers”).  There are other organizations you should know about though.  These are the organizations dedicated to oversight, advocacy and learning with respect to people with developmental disabilities in the District. 

A number of these organizations are federally-mandated and operate under program grants from the Department of Health and Human Services (HHS).  In every state or comparable jurisdiction, you’ll find three key organizations funded largely by HHS’s Administration on Intellectual and Developmental Disabilities, or AIDD, which recently became part of the Administration on Community Living.  These are:

• State Councils on Developmental Disabilities, focused on advocacy, systems change and capacity building to promote inclusion of people with developmental disabilities.  In D.C., this organization is the Developmental Disabilities Council (www.ddc.dc.gov, 202-727-6744).  I’ve mentioned the DDC in earlier blog posts.
• State Protection and Advocacy (P&A) Systems, to protect the personal and civil rights of persons with developmental disabilities, often through legal advocacy.  The P&A agency in D.C. is University Legal Services (www.uls-dc.org, 202-547-0198)
• University Centers for Excellence in Developmental Disabilities Education, Research and Service (UCEDDs), responsible for addressing issues and doing research relating to developmental disability.  The D.C. UCEDD is at Georgetown University (www.gucchdgeorgetown.net/ucedd, 202-687-5503).

 In addition to these federally-mandated groups, D.C. has a unique organization all its own, the Quality Trust for Individuals with Disabilities (www.dcqualitytrust.org, 202-448-1450).  If you haven’t already found Quality Trust, you should.  At this point, I should admit that I am on QT’s board, which I joined last year in order to support an organization that had played such an important role in our son’s life.  Quality Trust was established in 2001 through one of the consent decrees under the Evans lawsuit, which I talked about in an earlier post (“Where We’ve Come From,” September 25, 2014), as “a durable, independent, nonprofit organization that will monitor and advance the individual and collective interests of people with developmental disabilities in the District of Columbia’s service delivery system.”  Through 2011, QT received funding from the D.C. government to help it perform this role, but not anymore.  Quality Trust advocates on behalf of individuals seeking or already receiving DDS services, and monitors services provided by DDS/DDA under the Medicaid waiver.  It also serves as the organizational home for Project Action!, www.dcqualitytrust.org/advocates/join-project-action, a self-advocacy group for persons with developmental disabilities in D.C.  In an important breakthrough, the Quality Trust recently received a competitive HHS grant to develop a national resource center for supported decision-making (www.supporteddecisionmaking.org).

These are organizations that work actively on the advocacy front to make sure DDS is doing its best work and to keep pushing disability services in D.C. toward the future.  Some of them will no doubt be at the DDS performance review hearing before the Council’s Health and Human Services Committee (chair Yvette Alexander) on February 20 at 10 a.m., room 412 of the Wilson Building (1350 Pennsylvania Ave NW).  The D.C. Coalition of Disability Service Providers (www.dccoalitionproviders.org) will also testify. But the committee needs to know that individuals, and not just organizations, care about these issues.  If you can testify, testify.  If you can submit written comments, do that.  If you can come listen, do that.  This is the starting gun for consideration of the budget, and budget translates into services.  We can all be advocates.

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.

The Holiday Season

This holiday is a good one for our family.  When I think back to this time last year, I couldn’t have predicted that would be the case, and I feel very thankful.  This blog is a way of trying to give something back for our good fortune.  

Some of you reading this may not be doing as well.  You may be struggling to get the supports you need to live the life you want.  You may be a family member, friend or other unpaid support struggling to help someone you care about and growing more tired and frustrated by the day.  You may very well not have time to make it to all the meetings you hear about in this blog, and I only hope you’re able to get to a computer to see this.  Not everyone can.  

A very big goal for me over the coming year is to try to get more information out to folks who can’t come to meetings on weekdays because they’re at work, can’t get transportation, or are just overwhelmed.  Information affecting you needs to be more routinely and easily available, and I raise this every chance I get.  Programs and services, even when they’re out there, aren’t worth a thing if folks don’t know about them, and seeing the need for change isn’t worth a thing if you don’t have the time or information to make that change happen.  I’m only one voice, but if you don’t know anything else this holiday season, please know that I’m a voice for you.  Happy holidays to you all.

35 Years and Counting...

I mentioned in an earlier blog that the filing of the Evans lawsuit in 1976 led to political action as well.  The D.C. council passed D.C. law 2-137, “The Mentally Retarded Citizens Constitutional Rights and Dignity Act of 1978,” setting the framework and standards for the city’s treatment of individuals who had previously been living at Forest Haven.  This bill was critically important and ahead of its time in the late 1970s.  It said that people designated by the bill would have the same rights as other citizens of the District of Columbia, particularly the right to live in the community rather than in an institution, and due-process rights.  As we read about this bill now, though, we don’t have to get past the title to know that it no longer represents the cutting edge of thinking about people with disabilities.  In 2012 the “People First Respectful Language Modernization Amendment Act” altered the language of law 2-137 to refer to “persons with intellectual disabilities,” bringing the terminology used in the bill into the 21^st century.  Sadly, however, the essential provisions of the bill remain the same as when it was first passed, at the dawn of D.C. home rule. 

Incidentally, I’m not the first to notice this! As my son was entering his mid-teens and I was just barely beginning to examine the world of adult services he would enter five years later, a strong group of advocates had just succeeded in getting an entirely new bill introduced into the council.  That bill, the Developmental Disabilities Reform Act, or DDRA, was introduced in the council in 2009 and for a time it seemed to have tremendous momentum.  (The blog that was set up to track its progress can still be found, at http://dc-ddleg.blogspot.com.)  But as 2010 drew to a close, it died in committee.  Had it passed, this bill would have modernized a lot more than language, and now, four years later, two of its most important proposed reforms remain incomplete:

Commitment.  People who lived in Forest Haven were sent there by the court system through a process of commitment, and although law 2-137 focused on deinstitutionalization, it kept the courts involved.  Since the law has not been substantively revised, it is still the case that persons with moderate to severe intellectual disabilities are “committed” to receiving community services.  The impact of this is that a judge in the D.C. Superior Court actually orders the services that DDA must provide, rather than the person or their family members having the decision making power.  This was briefly discussed at the Supporting Families Community of Practice meeting on December 18 and the next steps in addressing this through legislation will be a major focus of the next scheduled CoP meeting in the spring. 

Limited reach.  Because 2-137 is so specific about who can receive services, only individuals with an intellectual disability (in general, IQ of under 70) can qualify to receive services.  Anyone with another type of developmental disability cannot qualify for DDA services.  The DDRA would have changed this, and the bill did not advance to the council floor in part because of the expected cost of reaching people with autism and other developmental disabilities who often do qualify for services in other jurisdictions but do not qualify here.  In the interests of fairness the system must change to be more inclusive, but budget considerations will be prominent in any council deliberations on a bill to do so, and council members will need to hear very clearly that this is a priority for the citizens of D.C.  That, my friends, means us.

No word as yet on Mayor-elect Bowser’s selection to head DDS.  Whoever it is, we must make sure these fundamental reforms are on their agenda, as well as on the agenda of Council member Jim Graham’s successor as chair of the Committee on Human Services.

The Mayor-elect Needs to Hear from You!

In my last post I wrote about the public forum on December 2 for Mayor-elect Bowser’s health and human services transition committee.  That forum was dominated by issues of homelessness, which was no surprise.  But this is still the committee – chaired by Laura Meyers and Louvenia Williams - that will be making recommendations to the mayor-elect with respect to disability concerns, as well.  There are crucial issues on the horizon – the need to bring the Evans lawsuit to a close, a goal that’s nearly within reach; the need to alter D.C.’s outmoded system of “commitment” for individuals with significant intellectual disabilities; and the need to broaden the system of waivers to cover not only persons with intellectual disabilities, but those with developmental disabilities as well.  If Laura Nuss, the current director of the Department on Disability Services, is replaced at this time, all these urgent goals will be dealt a serious setback.  Every one of you reading this has a stake in these essential reforms, and therefore you have a stake in keeping Laura in this position.

The mayor-elect and her transition team have a great many important decisions to make about filling key positions in the administration.  Just today she began making her first appointments, but as she herself has said, not all incumbents must go.  She needs to hear from us, and she needs to hear from us now, that Laura Nuss is one of the senior appointees she must keep on the job!  So put yourselves down in front of your computers, go to the mayor-elect’s transition website,  www.wearewashingtondc.com, hit “Contact us,” and tell the mayor-elect, as well as Ms. Meyers and Ms. Williams, that Laura Nuss needs to stay.  It’ll only take you a minute, but it’s an important minute.

Once we know Laura is being kept on, we can get back to focusing on the reform agenda.  And when the mayor-elect gets all these messages, she’ll also know there’s a constituency out here that cares about disability issues, and we’re going to speak up! 

All together now!  Just do it, folks!