The Road Behind, the Road Ahead

Two articles appearing in the Washington Post over the past week provided much food for thought for people concerned with disability rights. I’m usually very practically minded in my blog, but these have me thinking more philosophically, and I hope to inspire you to do likewise.

First, this obituary: https://tinyurl.com/y2w8h4f3.  If you don’t know who Jean Vanier was, then you should read this concise story of his life end to end.  Vanier was a trailblazer in altering attitudes toward people with intellectual disabilities, and he left behind a model that lives on in L’Arche (https://larche.org/en/web/guest/welcome) communities worldwide.

Second, this article from Sunday’s Outlook section:  https://tinyurl.com/yynbrs7g.  This is harder to read, and introduces issues which risk dividing rather than uniting us.  I’m putting it before you in the belief that the article does a good job with a complex subject.  It’s only by grappling with such fundamentals that we can make progress together toward a world of greater acceptance and mutual support – such as Jean Vanier envisioned.

Read these, examine your heart, and move forward with courage.  Happy Mother’s Day.

My name is Carol Grigsby.  I share information and advocacy opportunities on issues affecting citizens with developmental disabilities in Washington, D.C., including my own son.  I currently chair D.C.'s State Council on Developmental Disabilities, as well as serving on the board of the Quality Trust for Individuals with Disabilities and the Family Support Council of D.C.'s Department on Disability Services.  Previously a member of the federal government’s senior executive service, I have lived in D.C. since 1978. 

Follow me on Twitter @DDinWDC.

Lawyers' Committee for Civil Rights Examines D.C. Housing

On April 27 Thomas Silverstein of the Lawyers’ Committee for Civil Rights Under Law (https://lawyerscommittee.org/) spoke before the D.C. Autism Society about a report the Committee is working on concerning equity and discrimination in D.C. housing.  The Committee has worked with other public housing authorities in the country to identify key issues and make recommendations on the housing front, but this is the first time they have tuned their attention to Washington, D.C.  Although the report’s focus is broader, there will be a chapter focused on the specific challenges of people with disabilities.  That chapter will look at:  trends in the numbers of people with disabilities in D.C.; issues of accessibility (in the broad sense, not just physical); and finally, broader issues of community integration.  The report is being done under a consultancy to the D.C. Department of Housing and Community Development (DHCD), but will treat issues that go beyond DHCD’s direct responsibility.

After the Silverstein presentation, there was a lively conversation centered on the personal experiences of people in the room, most of whom have family members receiving supported-living services from DDS.  This group is a small subset of the people whose situations the Lawyers’ Committee will be looking at, but the same high rents that are leading DDS to move people to Prince George’s County obviously have an effect across the board of forcing people out of D.C.  In addition, we discussed problems with set-aside units in new developments, including developers’ minimal efforts to advertise these units and difficulties some DDS providers say they have had in accessing such apartments for people they support.  One attendee also called attention to Sedgwick Gardens, the less-than-successful effort at community integration on Connecticut Avenue that has been written about in the Washington Post:  https://tinyurl.com/yy58h4yd.   

The report will be available for public comment in two to three months and the Lawyers’ Committee plans to loop back to all the groups before whom they have presented.  I’m hoping to get the Committee to the next public meeting of the D.C. Developmental Disabilities Council, on May 16, 3-5 p.m. at One Judiciary Square (here’s the flyer:  https://tinyurl.com/y68g77bq).  All are welcome, and I hope some of you also will be there!

Carol Grigsby shares information and advocates on issues affecting her own son and other citizens with developmental disabilities in Washington, D.C.  She is currently chair of D.C.'s State Council on Developmental Disabilities, as well as serving on the board of the Quality Trust for Individuals with Disabilities and on the Family Support Council of D.C.'s Department on Disability Services.  She retired from the federal government’s senior executive service in 2011 and has lived in D.C. since 1978.  Find her tweets @DDinWDC!

First Annual D.C. Autism Event a Rousing Success!

The first annual celebration of Autism Awareness/Autism Acceptance Month by the Developmental Disabilities Council was a tremendous success.  Numerous organizations were represented, and the turnout of people interested in receiving and sharing information was outstanding.  I even heard about one young person who just happened by to learn what autism is all about, so that was a great teachable moment!  Thank you to everyone who exhibited, everyone who attended (especially the autistic young people who came to advocate for themselves!), and to all of you who work year-round to celebrate the strengths of D.C. residents with disabilities while ensuring the right supports are available to them.

I’d like to thank DD Council executive director Alison Whyte, as well as Sudie Johnson and Denise McCain from the Council staff, for all their effort in putting the logistics together and staffing the event.  I’d also like to give a shout-out to Mat McCollough, director of D.C.’s Office of Disability Rights, and to Andy Reese, director of the D.C. Department on Disability Services, for taking the time to come by and show their support.

We expect to make this an annual event, demonstrating the commitment of your Developmental Disabilities Council to “representing” on behalf of all people with developmental disabilities across the District.  Councilmember Nadeau, other D.C. councilmembers, and Mayor Bowser, please take note: 

D.C. has citizens with autism as well as other developmental disabilities that do not qualify as intellectual disabilities, and they deserve meaningful supports which they are not now getting. The DD Council and its partners are dedicated to remedying this shortfall in the District’s services for its residents with disabilities, so join us!

Carol Grigsby shares information and advocates on issues affecting her own son and other citizens with developmental disabilities in Washington, D.C.  She is currently chair of D.C.'s State Council on Developmental Disabilities, as well as serving on the board of the Quality Trust for Individuals with Disabilities and on the Family Support Council of D.C.'s Department on Disability Services.  She retired from the federal government’s senior executive service in 2011 and has lived in D.C. since 1978.  Find her tweets @DDinWDC!

Autism Acceptance in D.C. - this Wednesday!

This is Autism Awareness/Acceptance Month! 

The D.C. Developmental Disabilities Council (DDC) is responsible for “identifying the most pressing needs of people with developmental disabilities in their state or territory…[and] advancing public policy and systems change that help [them] gain more control over their lives.”  This includes autistic residents of the District! So, on Wednesday, April 24 (just two days away!), from 12:30 to 3:30, your DD Council is sponsoring an event at the Cleveland Park library to celebrate this special month and share information about resources and organizations focused on supporting people with autism in the District.  (If your organization has not yet signed up, contact executive director Alison Whyte at alison.whyte@dc.gov or Denice McCain at denice.mccain@dc.gov.)  Here’s the official flyer:  https://tinyurl.com/yxggqeho.

Autistic adults are not eligible for services under the Medicaid waiver administered by D.C.’s Department on Disability Services (DDS) unless they also have an intellectual disability, and this is something we hope to change – a point I made as the new DDC chair in my testimony before the DC council’s human services committee earlier this month.  By holding this event we hope also to keep the light shining on this fact,  and build support to remedy this shortfall in the District’s support system for residents with disabilities.

Spread the word and turn out yourselves, this Wednesday, April 24, 12:30 to 3:30 at the Cleveland Park library, to celebrate together and start shaping a better future for D.C.’s autistic citizens!

The Pressure is ON: D.C. Budget for Disability Supports

Mayor Bowser’s budget for the upcoming year is facing challenges, and that could spell trouble for the budget of the Department on Disability Services (https://dds.dc.gov/).  That’s why I joined a number of others at the hearing April 4 before the D.C. city council’s human services committee to testify that the council should support the entire budget.  You can find the video of that hearing at http://dc.granicus.com/MediaPlayer.php?view_id=2&clip_id=4972.  I led off the testimony on DDS, which starts around minute 45:00, and this time I testified in my capacity as chair of the D.C. Developmental Disabilities Council (https://ddc.dc.gov).  I thought that was important because DDS needs strong support in order to ensure the council isn’t tempted to make any cuts.  In addition to pushing for support to this year’s budget, though, I also made a point of urging the council to begin moving to broaden eligibility for the D.C. disability waiver – determining eligibility based on IQ is an outmoded and inappropriate way to determine people’s needs – so that autistic people and those with other developmental disabilities can get the supports they need. 

The housing policies and procedures have been back on the agenda at DDS as well.  There have been some improvements in transparency, specificity and flexibility, but DDS needs to make sure its service coordinators are really prepared to guide people through the process and the issues that are going to arise, and DDS has to do all it can to mitigate the risks over which it has control.  Search “housing” in the box to the right to see my earlier posts on this subject!  These policies are going to happen – that’s clear – because of DDS concerns about unforeseen increases in its past budgets.  The initial rollout wasn’t handled well, and the road is not going to be easy, but it’s true that DDS has to take steps to enable it to serve more people who are currently going without support.

I’m writing this on a break at this year’s national Disability Policy Seminar (https://disabilitypolicyseminar.org/), sponsored by the Arc (https://www.thearc.org/), Self Advocates Becoming Empowered (https://www.sabeusa.org/), and others.  Ricardo and Donna Thornton brought everyone to their feet this morning when they told their story of what community integration has meant to them! Take a look:

 Back to the budget, and now it’s your turn!  I hope you’ll feel moved to send your own testimony in support of the budget and broader waiver eligibility to humanservices@dccouncil.us!  This is important, and getting more so – make it short, but let the committee hear you on this!

Carol Grigsby shares information and advocates on issues affecting her own son and other citizens with developmental disabilities in Washington, D.C.  She is currently chair of D.C.'s State Council on Developmental Disabilities, as well as serving on the board of the Quality Trust for Individuals with Disabilities and on the Family Support Council of D.C.'s Department on Disability Services.  She retired from the federal government’s senior executive service in 2011 and has lived in D.C. since 1978.  Find her tweets @DDinWDC!

Taking the Long View

This past Wednesday, March 27, was a rousing celebration of Project Action!’s 30^th anniversary (https://www.dcqualitytrust.org/families/join-project-action/) and Developmental Disabilities Awareness Month (https://www.eventbrite.com/e/celebrating-30-years-of-self-advocacy-tickets-57407281725).  Representatives from Mayor Bowser’s administration and from Councilmember Brianne Nadeau’s office joined a crowd of pumped-up disability advocates at the Department on Disability Services to celebrate and to remind ourselves how necessary it is to take the long view – a helpful perspective this week when the decision to defund, then refund, Special Olympics has been so much in the news: https://www.usatoday.com/story/news/politics/2019/03/28/president-trump-restoring-funding-special-olympics/3302983002/.

This backdrop made the Special Olympics video we viewed (https://www.jointherevolution.org/50-game-changers/ricardo-thornton) that much more compelling.  The Thorntons have so much to teach all of us, but this time around it wasn’t just Donna and Ricardo doing the teaching, but also Ricardo’s late sister Earline, who died while the three were still at Forest Haven and was buried on the grounds o that institution in Laurel, Maryland.  On Wednesday DDS director Andy Reese announced that DDS will name a conference room in her honor as an ongoing legacy.  My imperfect picture captures that announcement:

Many representatives of Project Action! were at the event, where the organization handed out tokens of appreciation to a number of their ongoing supporters.  There were many touching tributes, but I especially liked this statement by Alison Whyte, the executive director of the D.C. Developmental Disabilities Council (I may be biased as the new chair!): https://drive.google.com/file/d/1ZMJn1TX0M9Bk90WGGiaaA3fBSa0wiIde/view?usp=sharing

As our community faces upcoming challenges (budget, housing…more to come on those) it’s great, and healthy, to stop and celebrate.

Carol Grigsby dedicates herself to information sharing and advocacy on issues affecting her own son and other citizens with developmental disabilities in Washington, D.C.  She is currently chair of D.C.'s State Council on Developmental Disabilities, as well as serving on the board of the Quality Trust for Individuals with Disabilities and on the Family Support Council of D.C.'s Department on Disability Services.  She retired from the federal government’s senior executive service in 2011 and has lived in D.C. since 1978.  The views in https://www.DDinWDC.com are her own.

Housing Events and More during Developmental Disabilities Month

The next two weeks provide opportunities to celebrate as well as opportunities to advocate.  Do both!

Wednesday evenings this week and next present important opportunities to celebrate Developmental Disabilities Awareness Month (https://nacdd.org/ddam).  From the event website at https://www.eventbrite.com/e/celebrating-30-years-of-self-advocacy-tickets-57407281725:

March 20: Loving -- Heartbreak, Happily Ever-Afters, and Everything In-between; 6 – 8 pm @True Reformer Bldg/Lankford Aud., 1200 U St., NW
A lively discussion is sure to happen as panelists with disabilities share their experiences about building and maintaining healthy, intimate relationships. Clips of Profoundly Normal will be shown to spark conversation. Based on the life of Ricardo and Donna Thornton, this made-for-television movie tells the story of their journey from Forest Haven, the District's former institution for people with developmental disabilities, to husband and wife, to parenthood. Hosted by DDS and the Developmental Disabilities Council (DDC) this event is free and open to the public. For more information, contact Emily.Price@dc.gov.

March 27: Celebrating 30 Years of Self-Advocacy
4 – 7 pm @ the Department on Disability Services, 250 E St., SW
This event highlights the work and honors the members of Project ACTION! for their commitment and dedication to disability rights. Project ACTION! is a coalition of self-advocates and advocacy organizations throughout the DC metropolitan region. It started in 1989 when a small group of people with developmental disabilities began meeting monthly at the Lt. Joseph P. Kennedy Institute to discuss issues impacting their lives and goals they wished to achieve. It is now an independent 501 (c) 3, supporting people with disabilities to become national self-advocates with members serving on various disability organization boards and committees. For more information, contact Mark.Agosto@dc.gov.

But in between those two celebratory events, take in one of these important follow-up sessions on the proposed DDS housing policies that I’ve covered in several recent blog posts (https://DDinWDC.blogspot.com, search “housing”):

Monday, March 25: HCBS (D.C. Medicaid waiver) meeting

2-4 pm @ the Department on Disability Services, 250 E St, SW

(with pre-meeting for self-advocates from 1-2 pm) OR

Wednesday, March 27: Special Session on Housing Policies

1-3 pm, Ora Glover Meeting Room #3

1800 Good Hope Road, S.E.

Make sure you come to at least one of these because these policies are going to affect greatly people with disabilities who receive residential supports in D.C.  DDS has hosted a number of “listening sessions,” at Family Support Council (https://dds.dc.gov/event/public-meeting-family-support-council-3282019), Supporting Families (https://dds.dc.gov/page/dc-supporting-families-community-practice), Project Action! (https://www.dcqualitytrust.org/families/join-project-action) and other meetings.  Now I hope we’ll be getting answers from DDS to the many questions advocates have raised in earlier sessions.

Finally, what a great time we had at Quality Trust’s Better Together reception last week!  Thanks to Phyllis Holton for arranging such a great gathering, and thanks to everyone who came out and supported this essential organization.  We’ll see you at the summer gala!

And stay tuned for Autism Awareness/Acceptance Month (https://autisticadvocacy.org/projects/community/autism-acceptance-month) in April!

Two ways to invest in the future

Before I dive in, I’d like to extend personal thanks to Winslow Woodland and Erin Leveton.  You both know why.

And now down to business.  By now, I’m assuming you’ve sent in your testimony to the Human Services Committee (humanservices@dccouncil.us) with respect to DDS performance – whatever you have to say, positive or negative or somewhere in between – or if you’d like to put in a plug for expanding services beyond intellectual disabilities – NOW’S THE TIME, BY MARCH 7.  It can affect the DDS budget for next year.  Feel free to read my last blog post if you’d like some ideas!

But there are two other immediate ways for you to invest in the future of people you know and support in D.C.

     On Friday, March 8, from 9:30 to 3:00, you can attend all or part of the Supporting Families Community of Practice meeting at DDS (250 E St SW, Federal Center SW metro), which this time around will offer opportunities to learn more about Supported Decision Making (and how to make it real in your life.  Contact Emily Price (emily.price@dc.gov) for more information.  The Family Support Council will also be taking up SDM in a more detailed way at its upcoming meeting later in March, and Emily can tell you more about that too if you’re interested.

·        And on Tuesday, March 12, 4:30 to 7:00 kick back and have some fun at the Quality Trust Better Together Reception at Umaya Izakaya Restaurant, 733 10th Street, NW.  Buy tickets at https://qualitytrustforindividualswithdisabilities.networkforgood.com/events/10906-better-together-reception.  Yes, I’m on the QT board, but that’s because it plays a crucial role in providing ongoing monitoring, oversight and advocacy for people receiving services and supports from DDS.   QT often operates behind the scenes but it’s more important than you may realize.  So turn out on Tuesday night to give QT and the folks you care about your support, and have fun doing it.  I’ll be there, with my son – see you there!

I haven’t heard anything more about when DDS will host a special meeting or meetings on the draft housing and contribution to care policies that I’ve discussed in recent blog posts, but at the performance hearing on February 21 Andy Reese said that the new complaint system called for in the DSRAA (take a look at the page over to the right “Acronyms and Organizations” if you don’t know what this is) would be in place before these new policies are implemented, so that’s a good sign.  Watch this space for more news about an upcoming meeting on these policies (DDS feel free to post a comment!), and in the meantime, search “Housing” in the block to the right to read my recent blog posts about these policies.

Smooth Sailing?

There was a good turnout by advocacy groups, providers and a few self-advocates at the performance review hearing on the Office of Disability Rights (ODR) and the Department on Disability Services (DDS) in the council’s committee on human services yesterday. The archived hearing can be found at http://tinyurl.com/y28h79f7.

The first 50 minutes or so of the video contain testimony by, and questions for, Mat McCollough, ODR director (http://tinyurl.com/yxgeyqeq) and the balance of the video is about DDS.  (You’ll understand the rest of this post better if you take a look, over to the right, at my updated page of acronyms and organizations you should know  – maybe you’ll want to print that out.) 

Provider agencies (starting at 0:50:00) who spoke expressed particular concern about:  1) the fact that D.C. rents are far outstripping the DDS rent caps ($1599 for 1BR and $1894 for 2BR apartment), with the result that people receiving residential supports are often moving to unfamiliar or even unsafe neighborhoods or over the line into Maryland;  2) the difficulty of attracting and retaining DSPs (given that the rising D.C. minimum wage is offering employment alternatives at the same rate of pay with fewer responsibilities and challenges); and 3) problems with lapses in services due to flaws in the Medicaid recertification process.  Later, Jimi Lethbridge from Quality Trust (about 2:15:00 on the video) and Tawara Goode and others from the Georgetown UCEDD (starting around 2:30:00) talked about the fact that D.C.’s I/DD waiver continues to be limited to those with an intellectual disability, and Sandy Bernstein of DRDC/ULS (around 2:05:00) spoke at length about the fact that, even within current eligibility guidelines, DDS’s intake office is creating many obstacles to admission for waiver services.  Both Sandy and Jimi talked about significant delays in getting services started and getting timely action in situations of real urgency, and concerns also were raised with respect to the delay in getting the complaint mechanism called for in the DSRAA legislation established, and delays, inconsistencies and service lapses in RSA.  And yes, I had my say (around 2:10:00) about housing policies now under consideration and supported decision making at the operational level in DDA.

After the four panels of witnesses, Andy Reese, DDS director, testified (at minute 2:50:00 and here: https://tinyurl.com/y242b22a), followed by Q and A.  What I found a little discouraging was:  1) the fact that of all the committee members, only the chair, councilmember Brianne Nadeau, showed up (although Grosso had staff there throughout); and 2) the fact that witnesses were asked few follow-up questions and that, while Andy made a good case for DDS accomplishments over the past year, for the most part his answers during the Q and A were taken at face value with little or no follow up.  (If you watch nothing else, you should see how you feel about his answers to the questions posed to him, starting around 3:10:00 in the video.)  Nadeau also didn’t ask anything about the issue of expanded eligibility, probably because no one’s going to think about doing anything that takes more money unless there’s plenty of public advocacy.

Which leads me to another point.  There was no representation yesterday among the witnesses by younger self-advocates, by anyone (except for one person with early-onset Alzheimer’s) having trouble with eligibility for services or quality of services, or by any family members other than myself.  I’ve heard enough from many of you to know that you aren’t uniformly satisfied, and Sandy and Jimi talked about a lot of situations over the past year that required their intervention.  If you want anything to change, though, you can’t hide behind those groups (or behind me!).  You need to speak up.  I know that it’s hard to make it to hearings in person, but the committee on human services will be accepting written testimony through March 7, so if you have anything to say, by all means say it.  You can send your input to humanservices@dccouncil.us.  And if some of what you want to say is too private, you can offer (as I have) to meet more confidentially with committee staff.  Otherwise, I guess it’s all smooth sailing…???

Is DDS Performance Measuring Up?

On Thursday, February 21, starting at 10:00 a.m., the D.C. council’s Committee on Human Services, chaired by Brianne Nadeau, will hold its hearing on DDS performance over the 2018 fiscal year, in preparation for the FY 2019 budget season.  If you can’t attend in person, you can follow along online by clicking this link http://dccouncil.us/room-500/ or try https://entertainment.dc.gov/page/dcc-services-live to stream it (thanks to Emily Price for this information!).

DDS has answered a number of preliminary questions submitted by the committee and those are included here:  http://dccouncil.us/wp-content/uploads/2019/02/dds19.pdf.

There will be plenty of attention given to the pending housing policies as well – latest news is that DDS will hold a special session sometime in March.  More to come -