Friday, December 22, 2017

Unfinished Business and a Small Favor!

When I last wrote, I promised a more complete readout on the December 8 Supporting Families event.  In the meantime, though, I wanted to let you know the latest on the Disability Services Reform Amendment Act of 2017 (B22-0154), which I covered in my last post.  The Human Services Committee unanimously voted to send it on to the full council, where it will receive its so-called “first reading” – the first step before full passage – on January 9.  Now is the time to let your council member know that you favor the bill!

As for the Supporting Families Community of Practice - I was there only in the afternoon, but Emily Price already has posted all the materials from the meeting on the DDS website, at  She also plans to make the next meeting (on March 9) available remotely by Webex for those who can’t attend. There were important presentations on the new Cultural and Linguistic Competency Community of Practice, the OSSE "report card," and other issues, so I hope you'll look at all of those.

During the afternoon session, Erin Leveton made a presentation on accomplishments during the first five years of the SF CoP.  This group has had a real impact, not least of all in reaching a broad cross-section of families in D.C.:  Erin reported that from an initial mailing list of only 50 people, the SF CoP now reaches close to 1000 people in one way or another.  She also gave a presentation on changes to the I/DD waiver that were recently approved by CMS.  (If you don’t know what these acronyms stand for, see my page on Acronyms and Organizations.  Also, Power Points for both her presentations are at the link above.)

Andy Reese showed up during lunch to talk with the group.  He took a great many questions on the recent reorganization of DDS, and we learned:

-          Maximum effort has gone into providing shared services for both DDA and RSA.  Particularly on the Quality Assurance front, RSA was in need of an upgrade, and establishment of the Quality Management Administration under Jared Morris is intended to help with that.

-          I informed Andy that some have expressed concern about that the exodus of people with specialized expertise, particularly in Incident Management.  He expressed confidence that those departures will not affect the quality of services and oversight by DDS, and Winslow Woodland, now acting deputy for DDA, also joined the meeting briefly to underscore this.

-          The DDA intake process has been improved so that it takes less time and starts by identifying the needs of the person and their family up front.  (This is undoubtedly a customer-service improvement but does not change eligibility requirements for the waiver, based primarily on an IQ score of 69 or below before age 18.)  People interested in paid work receive assistance in getting started with their RSA application as well.

-          I mentioned my hope that Andy would restore the word “State” to the name of the Office of Policy Planning and Innovation (see “Changes Surely Afoot,“ November 9), and I understand he has agreed to do so.

With respect to the realignment, the Family Support Council met on December 21, and their next public meeting, on January 25, will be attended by senior DDS officials and will focus on this subject.  Daisy Brown, who chairs the FSC, wants to ensure that the FSC continues to track DDS progress following the reorganization, and she plans regular briefings at this and future FSC meetings.  Although no one asked in the December 8 meeting when DDS would be recruiting for the RSA deputy position that was vacated by Pamela Downing-Hosten, I’m told that the position is filled or very close to being filled.  I’ll let you know when I learn the name, but this is excellent news.

That’s the update, now for the favor!  I’ve been writing this blog for over three years now, and during that period I hope you’ve come to rely on it for information and advice about what’s happening and where you can make a difference for D.C. citizens with developmental disabilities in D.C.  I regularly come across new folks who are faithful readers, and I thank all of you for letting me know you find my blog useful.  In this holiday season, though, I’m asking you to give me a gift – feedback!  What would you like to see more of here?  Are there changes that would make it more interesting or helpful to you?  Use the Comments or just tell me what you have on your mind.  And pass the word along – not everyone can make it to meetings, and I worry about those who are too busy – with paid work, caregiving, and so many other demands – to make their voices heard. 

Thanks in advance for your reactions, and Merry Christmas, Happy Chanukah, best of the holiday season to one and all - 

Thursday, December 14, 2017

A Gift You Can Give Right Now!

There were a lot of announcements and discussions at last Friday’s Supporting Families Community of Practice, and I’ll cover those shortly in another blog post.  Right now, though, I need to get this out in a hurry since you have action to take over the weekend

One of the announcements at the SF CoP was that there would be a markup on December 12th in the D.C. council’s Human Services committee of bill B22-0154, which you previously have seen referred to here as the Citizens with Intellectual Disabilities Civil Rights Restoration Act, or CIDCRRA.  It’s now been renamed the Disability Services Reform Amendment Act of 2017.  That markup took place as planned, and the new text of the bill is attached (, as well as the background report on the bill including a summary of testimony at the June hearing (
Now that this bill is finally on the move, I’m told the committee, and the council, plan to move quickly on it.

I’ve written at length before about this bill, particularly in my posts “Slow and Steady Wins the Race” and “No Overnight Successes” from June of this year, and “Yes, You Really Can do Something” (July 2016), “A New Year, A Chance for New Beginnings” (January 2016) and “Overdue Change for the District” (November 2015).  Just to remind you, though, if passed the bill would do these key things:

-          Eliminate the requirement for people with a moderate to significant intellectual disability to be “committed” by the court before receiving services.  Currently people in this category must be assigned a court-appointed lawyer and must have the amount and type of their services decided by a judge.  This is a separate issue from guardianship, which allows the court to name a trusted individual to oversee care and services if necessary.  In fact, the commitment system can undermine the role of the guardian by permitting the court to make final decisions.

-          Allow those currently under the system of court commitment to remain under the system if they choose toPeople currently under court commitment may continue with the system to which they are accustomed.

-          Establish an enhanced complaint system within DDS.  This is new, and resulted from testimony and discussion at the committee’s June hearing on the bill.

-          Create a Supported Decision Maker role as a possible alternative to guardianship in addition to existing roles such as Power of Attorney.

My view on this bill, as you know if you read my testimony from the June hearing (, is that this is a crucial bill that recognizes we now have a system that can be responsive to people and their families, not just to the courts (the enhanced complaint process will help).  Please recall that my own son receives services without court commitment – I trust my own voice more than a court-appointed lawyer’s - and that local disability advocacy organizations that are in the forefront of safeguarding disability rights (such as Project Action!, Quality Trust and Disability Rights DC) are in favor of this bill.  Whether your family member is or is not under court commitment, you should favor this bill, too.

Please write to the council – your own councilmember as well as every member of the Human Services Committee ( to express your strong support for this bill.  It’s overdue, its day has come, and I assure you the lawyers with a stake in the current system are flooding the committee with statements in opposition.  Take the time now to give a gift to people with disabilities in D.C. – write to the committee, and the council, to express your strong support for B22-0154. 

Take a break from trimming the tree and do it this weekend!

Tuesday, December 5, 2017

Not a Time for Slowing Down

We’re between those busy holidays and there’s a temptation to think of nothing but that!  But there are some important events and issues that still deserve our attention this month.

I’m thinking in particular of the Supporting Families Community of Practice, which will be meeting this Friday, December 8.  Here’s the agenda:  Come if you possibly can – I know that’s hard for many folks, but if you think you’d be more likely to make it to SF CoP meetings if they weren’t on weekdays, it’s a good time to speak up.  Why?  Because there’s a new person coordinating the SF CoP, someone you may know already through her work on No Wrong Door and Person-Centered Thinking.  With Alison having left, Emily Price has now taken on the SF CoP, in addition to her other functions, and she’s getting off to a great start by reaching out for ideas.  In case you’d like to give her some input for her new position, you’ll find her at

As for Friday’s meeting, the SF CoP will be celebrating its five-year anniversary with, among other things, an update on the recent federal approval of D.C.’s revised Home and Community-based Waiver and the public kickoff of the new Cultural and Linguistic Competency Community of Practice.  There also will be a chance to talk with “DDS leadership” – I hope this means Andy Reese! – about recent changes in DDS organization and what comes next.  What won’t be on the SF CoP agenda this time around is the briefing on finance and investment issues that’s needed to help folks who may be thinking of opening an ABLE account.  Hopefully next time!

On Friday there also will be a brief discussion led by Molly Whalen of the D.C. Association for Special Education, on the “OSSE School Report Card Focus Group.”  (OSSE is the Office of the State Superintendent of Education” – and I wish we still had a State Office Although I don’t know much about this initiative, I’m looking forward to learning more.  One concern I know will be covered is the slowdown in funding for key reforms launched in legislation by the D.C. council in 2014, most particularly the plan to lower the age for transition planning from 16 to 14.  You can read more about this important issue at:

And on the subject of youth, councilmember David Grosso, who chairs the education committee, will be hosting a roundtable this Thursday at 4:00 on “Issues Facing D.C. Youth” ( Young people aged 21 and younger are encouraged to sign up by 5:00 today.  Seems to me the subject of funding for special education reforms should be very high on his agenda, and I know we’ll hear more about that roundtable at the Sf CoP on Friday. 

I look forward to seeing as many of you as possible at DDS this Friday!

Thursday, November 16, 2017

Welcome News

I got a couple of reactions from DDS to my last blog post, and both conveyed welcome information so I wanted to share the news promptly.

First, Andy Reese reached out with the new DDS organizational chart, which you can find here:

and which he says will soon be posted to the DDS website (  I’ve updated my page, “Acronyms and Organizations You Should Know,”  to reflect these changes.

Second, Erin Leveton (formerly with the State Office, now the DDS Office of Policy, Planning and Innovation), sent reassuring words with respect to ongoing activity in the Supporting Families Community of Practice.  She let me know that the next SF CoP meeting will take place on December 8 at DDS (250 E St. SW).  According to Erin: “Topics will include employment, the new cultural and linguistic community of practice, update on the HCBS waiver, and hopefully a presentation by Capital Asset Builders related to ABLE accounts + more.” 

Hurray for the potential Capital Asset Builders briefing!  I’m still exploring ABLE accounts, and have been surprised that the D.C. Office of the Chief Financial Officer (OCFO), which is the designated contact point for D.C. ABLE, hasn’t yet been able to clarify some pretty basic questions.  Still, from what I can tell the D.C. account is a pretty solid choice.

Erin also wanted me to know that the SODA’s transformation into the Policy office is a good thing.  She notes they’re still in the DDS director’s office, and adds: “We have added the person who does RSA policy to my team, which is great from an Employment First perspective.”  I definitely agree with anything that fosters DDA/RSA collaboration and helps folks find appropriate jobs (more on that in an upcoming post!), but I’m still not buying the idea that removing a state-level oversight office is a positive development. 

Thursday, November 9, 2017

Changes Surely Afoot

On October 27 I received an email that DDS director Andy Reese circulated broadly among DDS partners.  It described a number of personnel and organizational changes intended to eliminate duplication of operational and quality assurance services for DDA and RSA.  The most significant announcement was the creation of a new Quality Assurance Administration to be headed by Jared Morris, and the elevation of Winslow Woodland (“temporarily” according to the message) to be acting deputy director for DDA.

What’s most noteworthy is what the email doesn’t say.  A significant number of (mostly) senior-level folks have in fact been let go, foremost among them Pamela Downing-Hosten, named just last year as deputy director for the Rehabilitation Services Administration.  (I hear Andy will be overseeing RSA directly until a successor is chosen.)  But there are quite a few others leaving who, though their names may be less familiar, have been linchpins of the Incident Management and Enforcement Unit (which now will report directly to Winslow) and the Health and Wellness Unit.  I did not know most of these individuals well enough to judge for myself whether the changes are for the good or not, but I know some are concerned about whether too much expertise has walked out the door.  We’ll see. 

I’ll also be watching a couple of other developments.  Andy’s message announced that the State Office of Disability Administration, or SODA, will now become the Office of Policy, Planning and Innovation in the DDS director’s office.  While the new name may better describe what the SODA has been doing recently, its original designation as the “state” office gave it a potentially more robust oversight and coordination role vis-à-vis the “city” Department on Disability Services.  These state offices have been established across the D.C. government to assert that we are a jurisdiction equivalent in many ways to the fifty states, so I see the name change as unfortunate and symbolically important.  I hope it doesn’t also mean a demotion for the SODA.

I’m also hearing that Andy is lighting a fire under service coordinators, expecting more of them than pushing papers and chairing ISP meetings.  It’s hard to argue with this change, if it’s implemented properly and doesn’t lead to a “gotcha” mentality among service coordinators trying to look active.  For the moment though, most of the service coordinators I’ve encountered have been too passive, so I’m watching this cautiously and will judge by the results.

From what I can tell, most other folks are adopting a similar “wait and see” attitude.  Some also expect there will be more changes to come, so keep your ears to the ground, as I will!

Before closing, just a couple of postscripts on subjects I’ve covered in other recent posts:

·         Bill 22-0154, also known as the CIDCRRA (, has happily not faded away.  I understand that the chair of the council’s Human Services Committee, Brianne Nadeau (Ward 1), has a new staffer who’s getting up to speed on the bill and also looking at the shape of a stronger DDS internal grievance mechanism, which was discussed quite a bit in the June 15 hearing on the bill (see my post, “Slow and Steady Wins the Race,” June 28).

·         ABLE accounts.  In several recent posts I’ve talked about briefings in the SF CoP (see my Acronyms page!) on ABLE accounts in general, and the new D.C. ABLE account in particular.  I’m still waiting for answers to a few questions I’ve posed directly to the D.C. government and we haven’t yet opened an account – I’ll let you know more when I hear more or actually open one.  I’m also still hoping that there will be follow-through in the SF CoP on the financial briefings that were promised at the last meeting.

·         And speaking of the Supporting Families Community of Practice, things may be on a go-slow due to the departure of Alison Whyte, a longtime staffer at the DDS/SODA (last time I’ll write that!).  Wishing her well, let’s hope someone energetic picks up the ball soon on all the good work that group has done.

Tuesday, October 17, 2017

Thinking about ABLE

In my September 18 post (“News, News, News”), I wrote about the briefings on ABLE (Achieving a Better Life Experience) accounts at the June 29 and September 15 Supporting Families (SF CoP) sessions (  It was clear at that last meeting that some folks were skeptical, and I’m sure that DDS is now hard at work to arrange a financial workshop soon, maybe with Capital Area Asset Builders (, to help answer some of people’s more fundamental questions about finance and investing.  But since I was the one who pushed DDS to arrange these briefings, I owe it to you to try to give a little more of my own thinking about why folks needed to know about this opportunity.

As most of you know, I’m the parent of a young man with a developmental disability.  I first “tuned in” to the issue of ABLE accounts at the national Arc’s Disability Policy Seminar back in the spring of 2016 (, and I realized at that point what a powerful tool ABLE accounts can be for people with disabilities who want to save for a life goal.  A lot depends on personal circumstances though, and in my opinion, these are some of the most important things to know when it comes to ABLE:

·         Anyone with a documented disability can qualify for an ABLE account (, but ABLE is especially important for folks like my son who are receiving Supplemental Security Income (SSI) or Medicaid supports.  Without an ABLE account, if you want to save for a car to get to work, to pay for a class you want to take, or to buy some specialized equipment, you risk going over your $2000 asset limit and losing your SSI payments and your eligibility for Medicaid services. But if you save for these types of expenses in an ABLE account the money won’t count against that asset limit.  This is big, if you have a source of money and you’d like to save for important purchases to make your life better.

·         So, do you have any money you could save?  Maybe you’re lucky enough to be earning a little, but you have to make sure every month that your income doesn’t push your bank account above $2000.  Or maybe – just maybe – there’s a parent, or a relative or friend, who would like to help you out, but can’t give you money because they don’t want you to lose your Medicaid supports.  With an ABLE account, that income – earnings or gifts – won’t put your safety net at risk while you plan for your future.

·         What happens to the money in an ABLE account?  It’s invested – in stocks, bonds, and maybe a little cash – so it can earn interest for you.  Every ABLE account (more on the choices below) has different investment options – some options carry a little higher risk and so the interest you earn will be higher to reflect that, and some options are less risky so you’ll earn lower interest with those.  At the September SF CoP session, some people were worried that folks just wanted to gamble with their limited resources.  It’s true that there’s a risk with any investment except a traditional bank account – but there’s also the very strong likelihood of much higher returns.

·         Since the law was passed in 2015 allowing states to make ABLE accounts available, over 20 states have done that (, or  D.C.’s ABLE account is one of the most recent (  Many states allow non-residents to open accounts, so D.C. ABLE isn’t your only choice.  The investment options, fee structure (see below!) and other details are all a little different, so it’s hard to generalize about what’s best for a particular individual to do.  Eventually people will be able to look at different states’ record of money management and earnings, but it’s too soon to know that yet because they’re so new.  What you do need to know is that you can always move your money to another state’s ABLE account if you don’t like how things are going.

·         But there is something you do need to think about before you start putting money into an ABLE account.  Most accounts have a low minimum deposit to open an account – in D.C. that amount is $25.00 - but every account has management fees and when those are fixed fees they can quickly “erase” small amounts of money.  D.C. ABLE, for example, carries an annual fixed fee of $45 -55, plus a percentage based on the amount in the account.  A few states’ ABLE accounts – Tennessee’s is one that I know ( only carry a percentage fee, so those might be more attractive for people who can only invest a small amount to start with.

There’s more to know, but these are the basics.  I would just leave you with this: 

1)      Don’t distrust ABLE accounts right off the bat, they aren’t a scam. 
2)      ABLE benefits people who have sources of money available to save for important expenses but have concerns about pushing their savings above the $2000 asset limit.  If that’s not you, then don’t think any more about ABLE right now.
3)      Finally, If you have less than $100 to start an account, it still may be worthwhile for you, but I’d suggest you look only at the ABLE accounts that don’t carry a fixed fee.  You may pay a slightly higher percentage, but you’ll still be earning interest on your money.

Finally, please remember that although I’ve tried to be fully accurate, I’m not the ABLE expert.  So check the official websites – I’ve tried to provide the best links above – and think it through.  Hopefully DDS will host a financial workshop soon and you can get more of your questions answered then.

Monday, September 25, 2017

Here's How It Went Down

As I write this, I’m hearing the news that the Congressional Budget Office has issued a preliminary analysis saying the Graham-Cassidy bill to repeal the Affordable Care Act has found that millions would be left without insurance if the bill passes.  I’m also hearing that Senator Collins of Maine has come out in opposition.  The word is that this is the death knell for the bill, but like I said in my last post, the Obamacare repeal effort is like Dracula:  it just keeps rising from the dead.  So keep writing to your senators (if you have them, that is).

Yes, I was at the Dirksen Senate Office Building today.  I was wearing the orange and white colors of the Arc of the United States, but there were many, many other disability groups from around the country, there to protest the proposed cuts to Medicaid.  Unfortunately, few if any got into the hearing room.  As Senator Wyden of Oregon noted, the Republican chair of the Senate Finance Committee had chosen to hold the hearing in one of the smallest available hearing rooms, dismissing a request by Democrats to choose a larger room so more American citizens could attend.  As it was, the corridor outside the tiny hearing room was lined with folks in wheelchairs who were prevented from entering due to inadequate space.  Around 2:00, when the hearing was supposed to begin, a chant went up, “No cuts to Medicaid, save our liberty” which resonated down the halls of the Senate office building.  Since I was much further back in line, I left at that point for the overflow room, where I heard the same chants over the closed-circuit TV as Senator Hatch tried to start the hearing. 

I didn’t know until much later that some protesters had been dragged from the hearing room, but when I finally left the building around 4:30 the sidewalks just outside the Hart and Senate office buildings were lined with Americans in wheelchairs, including our own Heidi Case, formerly with Project Action!  I thought the view of all those folks locked out of a hearing in which issues so central to their lives were being decided was a powerful and depressing symbol of what was going on in the Senate today.  It wasn’t a pretty sight, and not our American democracy’s finest hour.  (But of course, in D.C. we’re locked out of the Senate every day, so that’s kind of familiar territory.)

I was worried as I watched the hearing that the event was so obviously structured to give senators Graham and Cassidy a soapbox to make whatever claims they wanted about their bill – a bill that has been changing day by day and that its sponsors have wanted to vote on quickly, without time for sound analysis.  If enough Republican senators have now stepped up to kill it, then bravo.  Maybe then there can be a serious bipartisan effort to make improvements to Obamacare without denying millions of Americans, in D.C. and elsewhere, with and without disabilities, the health care and other supports they need.

Sunday, September 24, 2017

Say No to Graham-Cassidy!

Since Senator McCain expressed his opposition to the Graham-Cassidy bill to repeal Obamacare, a lot of people are saying the bill is dead.  But it isn’t.  It isn’t dead until the vote takes place.  Tomorrow there will be a hearing by the Senate Finance Committee, at 2:00 tomorrow.  I plan to be there, along with others from the Arc (  But it’s important for the committee to hear from individuals about what this horrible piece of legislation would mean for them.  Here’s what I wrote:

I live and vote in Washington, D.C., so I realize I am no one’s constituent.  But there are real living, breathing people in D.C., and my son, who has a developmental disability, is one of them.  If not for the benefits he receives under one of D.C.’s Medicaid waivers for persons with disabilities, he would be in a very difficult position – and so would we.  I hope that you are hearing howls of protest in opposition to the Graham-Cassidy bill from friends and family whom I am actively trying to mobilize in the states you represent, but I must add my own voice as well.  Even though D.C. is unrepresented in the Senate, I hope the broader concern of Medicaid supports for people (children and adults) with disabilities will move you to do the right thing and oppose this bill.  Although some states will benefit in the short term from the reshuffling of Medicaid funds, over the longer haul Medicaid block grants, and per-capita Medicaid caps, are going to do only one thing:  reduce resources for people who need them, including people with disabilities – not to mention many, many others.

Improving on Obamacare is going to require serious, bipartisan effort.  Rushing to approve a bill with such far-reaching, and damaging, consequences without full consideration would be unconscionable, and a single hearing such as the one planned for September 25 does not begin to be adequate consultation.  This absurd rush to overturn Obamacare has to stop.  Human lives are at stake.

Carol A. Grigsby
Washington, D.C.

Send your own email, to  It only takes a few minutes and it’s important!

Monday, September 18, 2017

News, News, News

It’s fall again, with its new starts and new energy.  Unfortunately, at the national level there is a new energy behind the effort to repeal Obamacare, complete with cuts and caps on Medicaid that would have a serious impact on supports for people with disabilities throughout our country:  Since most of my readers are in D.C. though, we are unrepresented at the national level and can’t do a thing to head off this legislation, so if you’re a reader who actually has senators and representatives, please write to them and see that this bill never sees the light of day.

Things got off on a better foot at the local level.  On September 15 DDS hosted the Supporting Families Community of Practice (  The meeting included kickoff consultations by DDS about the possibility of instituting self-direction in D.C. – which allows a person receiving Medicaid waiver supports to have greater control over staffing and budget.  There will be plenty more discussion on this, since DDS won’t submit its plan to the federal government until December 2018.  (Possibly the much-discussed Individual and Family Support waiver plan will be submitted at the same time – stay tuned.)

I’ve been pushing hard for briefings on ABLE accounts (, which allow people with disabilities who have the resources to save for important purchases without exceeding the $2000 SSI asset cap or losing Medicaid eligibility.  You’ll recall I wrote in July (“Walking the Talk,” July 14, 2017) that Rebecca Salon had provided a good overview of these new vehicles, but the good news is that the D.C. ABLE program is now in place – the website is, which (if you were at the meeting Friday) is different from the link provided by the speaker.  D.C. residents can also choose to invest in another state’s ABLE account if they want, so it’s important to shop around and pick the one with the lowest fees and the best investment plan for you.  What was obvious in the discussion was that ABLE accounts are not for everyone, and also that there is a need for the SF CoP to facilitate some briefings on basic financial skills to help folks understand the world of investing and how they might benefit.

Employment and post-secondary transition were also key themes of Friday’s SF CoP meeting, and questions on these subjects dominated the Q and A with DDS director Andy Reese.  We heard about new initiatives by DDS/RSA (confused? click on my page over to the right, “Acronyms and organizations you should know”) to set up internships in D.C. agencies, and by the Office of the State Superintendent of Education to develop vocational programming for adults (  Speaking from personal experience in trying to help my son in his search for employment, I suggested that there are too few part-time jobs in the D.C. government as stepping stones for residents with disabilities, and Andy promised to look into this.

To follow up on my most recent blog post (“OK, Then I’ll Ask You This Way,” September 11), you should know that I also raised those concerns with Andy, and he has promised to get back to me.  But as I’ve been saying for years, while I appreciate his accessibility (and his predecessor’s), it should not be necessary to go to the head of the agency in order to get follow-up.

Other tidbits of news:

-          I haven’t heard anything since the D.C. council returned to business with respect to action on the CIDCRRA (  Hopefully councilmember Nadeau, chair of the human services committee, will not be too distracted by her campaign for re-election to follow up on this important bill.

-          Sadly, Heidi Case, energetic adviser to Project Action! in that organization’s advocacy efforts, left that position over the summer.  I missed PA!’s first fall meeting on September 16, but understand efforts are under way to find a qualified replacement.  I hope Heidi will find other ways to continue her vocal advocacy on mobility and other issues affecting our local disability community.

-          Another recruitment on the horizon is for the executive director of the DD Council, as Mat McCollough is being promoted to head the Office of Disability Rights.  As a member of the DD Council, I will be involved in the selection process, but Mat’s will indeed be big shoes to fill.

Whew! Have I missed anything?

Monday, September 11, 2017

OK, Then I'll Ask You This Way

I’m ashamed at having let a whole month go by without writing.  Hopefully August was as busy for you as it was for me, so maybe you didn’t notice.  After a family holiday with my in-laws, Labor Day brought a shocking turn with one sister evacuated in an Oregon wildfire and a niece hunkered down in Tampa last night waiting for Irma.   I guess I’m making excuses, but there really has been more than enough to keep me occupied recently.

I actually spent a good part of August in dialogue with DDS about my son’s ISP – if you can call it a dialogue when one side asks and the other mostly ignores.  Really, truly, the past few weeks have made me feel that customer service in DDS is on the decline, not on the upswing.  But rather than carry you through all the details, I’ll just paste in here the main elements of an email I sent to a senior DDS manager on August 29 (names are blocked):

-          (My son)’s service coordinator just changed, but we received no advance notice even though I had been in regular communication with his prior coordinator, xxx, as well as with her supervisors, about completion of his annual ISP (see below).  When I reached out again on August 11 I got a brief note from xxx saying he now has a different service coordinator, and shortly after that I got an email from the new coordinator.  As I mentioned to one of the supervisors, when a service coordinator is about to change I believe it’s appropriate to be notified in advance, especially when there’s an ongoing dialogue on important support issues.

-          (My son)’s ISP effective date was July 19 but the ISP is still incomplete, and more importantly the most recent draft xxx shared still contains a lot of outdated information from 2014-15 that has not been updated to reflect new events, progress and challenges.  (It really does seem to me that the previous coordinator had time to complete this before the transfer to the new one.)  If leaving outdated information in the ISP is normal practice in DDA, then I hope you’ll encourage changes in standard operating procedure.  Because the new coordinator does not yet know our son, and because we need to get the ISP completed, I simply provided appropriate information, but it really shouldn’t be up to me to do that.  It’s in the whole team’s interest to have a clear picture of the person they’re supporting.

-          Finally, in the midst of all this, the secure ZixCorp email system rolled out this month.  There was no advance notice of any kind, but suddenly the most routine emails from DDA began arriving through ZixCorp rather than as normal emails.  I have already signed up for the system and assume I’ll figure out how to save emails (as currently configured they disappear after a month), but many people who interact with DDA will have difficulty sorting through the new interface.  I think it would have been the right thing for people to know in advance that this was going to happen and for DDS to have offered some guidance to outsiders on the new interface.  As you know, I’ve long been in favor of ensuring privacy of personal information, but the new system should not be a barrier to routine interactions as is currently the case.

I'm still waiting to receive any sort of answer to my email – not even the simplest one saying folks are looking into these issues.  And we’re still waiting to see our son’s updated ISP, two months into the service year.

I worked in the federal government for over thirty years, and the concept of customer service was drilled into us.  DDS is a local agency with direct and personal responsibility for supporting people and their families move forward in life and achieve their personal aspirations, but my recent experience suggests the agency still has considerable work to do on the customer-service front.  This doesn’t mean the courts are the answer – I certainly not - but those of us interacting with and counting on DDS should be able to expect a higher level of responsiveness than we’re getting.

Monday, July 31, 2017

Access for All Who Need Supports

As you know, I’ve been advocating for some time to expand eligibility in D.C. beyond those who meet the IQ cutoff.  Others continue making this argument as well, but since 2010 there really hasn’t been an organized effort to get the necessary legislation and funding for expanded eligibility.  After last week’s Washington Post article about the risk of Medicaid cuts for people with disabilities nationwide, I grabbed a bigger megaphone and wrote a letter to the editor on this issue.  I hope you saw it in the Sunday paper on July 30, but if you didn’t, here it is:

Fortunately, for now, Obamacare and Medicaid seem to be safe.  But with the political environment the way it is, I’m not sure we can relax for long.  And justice for those who need support can’t wait for the political tide to turn.

Friday, July 14, 2017

Walking the Talk

The Citizens with Intellectual Disabilities Civil Rights Restoration Act, B22-0154, is getting a lot of attention this week, with articles in both the City Paper ( and Street Sense (  Both got some things right, others not so much.  I’ve given feedback to the journalists who wrote these articles, and I hope they’ll keep tracking the bill’s progress when the council comes back into session in the fall. 

One issue that’s sure to get attention from council staff and others during the recess is the question of developing stronger DDS grievance procedures.  The Department of Behavioral Health has a system that was referred to in the June 15 hearing as a possible model (   The Street Sense article indicates that DDS is in discussions about how to move ahead on this front, while the City Paper article quotes Andy Reese as saying he’s not sure what more needs to be done.  I truly hope Street Sense got it right, since DDS needs to make sure all the people it supports have as much recourse as they can when their supports aren’t going as they should. 

You know if you’ve been reading my blog that I strongly oppose civil commitment and don’t believe it’s the way to ensure good services, but that doesn’t mean things are perfect.  My son’s services are quite good overall, but I’m extremely active.  I read and react to his draft Individual Support Plan, talk with his providers about the goals they’re setting, and let folks know when things seem off track or information needs correcting. 

Over the three years since my son began receiving supports under the D.C. waiver, DDS leadership has promoted person-centered thinking and, more recently, family support in many of their policy-level meetings.  I know this is sincere.  Still, changes in paperwork and training sessions don’t change staff attitudes, as I know from my years in the federal government.  The public DDS deals with – those it supports as well as their family and friends - don’t know, and shouldn’t have to know, the ins and outs of the rule book in order to get the right services for a person and courteous personal interactions with DDS.  Quite a bit more work is needed to make customer service a natural and normal part of the workday at DDS.  Even if the reason is distraction or lack of motivation and not outright bad intentions, at the receiving end the result is the same.  So yes, absolutely, the system is improving steadily, but DDS still has work to do to make person-centered thinking and family support more than slogans.

What’s your experience with the DDS system?  I’d welcome hearing more from others about your experience, either through comments on the blog or next time you see me!  Reach out and let me know.

Before closing, a couple of postscripts:

-          I appreciated the briefing DDS’s Rebecca Salon gave on ABLE accounts ( at the June 29 Supporting Families Community of Practice meeting.  Like others, I’m excited about this new opportunity for people to save and invest for their futures.  After the briefing, though, I did a little of my own research and found many of these accounts carry high fees, which makes them much less accessible to many of those who need them the most.

-          And remember the Quality Trust gala Saturday night!  Come and celebrate QT’s first 15 years at the Renaissance Hotel, 999 9th Street NW, reception beginning at 6:30 p.m.  It’s not too late to get tickets:  contact Courtney Clark,  I hope to see you there!

Wednesday, June 28, 2017

Slow and Steady Wins the Race

As I’m writing now, everyone’s attention is on the Senate bill to rewrite Obamacare and potentially reshape Medicaid.  It’s easy to get totally absorbed by what’s happening at the national level, but today I ask you to take a moment to note some hopeful signs on the local horizon.

I attended the June 15 hearing on B22-0154, the “Citizens with Intellectual Disabilities Civil Rights Restoration Act,” and testified along with other passionate advocates in favor of the bill.  Here is my own testimony, along with testimony by Andy Reese and a few others:  The overwhelming majority of people testifying were in favor, but there was also heartfelt testimony from family members and lawyers who feel the civil commitment system is working for them.  What’s important to remember is those already under court commitment will not be prevented in any way from continuing to receive services in this way – so hopefully those opposing the bill will reconsider and let the rest of us move forward with this important legislation.

Councilmember Nadeau, chair of the human services committee, seemed fairly persuaded from the outset to favor the legislation.  Her perspective was gratifying, and she had obviously done her homework.  The only other councilmember who attended in person was Robert White (at-large), and while he was initially teetering, after the hearing he seemed to be tipping in favor, as did David Grosso, the other at-large member.  They have some specific concerns that could slow or threaten the bill’s progress though – more on that below.  And as for Brandon Todd (Ward 4) and Trayon White Jr. (Ward 8), I for one have no idea where they come out – when I wrote after the hearing, Todd’s staffer was noncommittal and Trayon White’s staff didn’t answer my email. 

Even the three committee members who seem favorable toward the bill have concerns that the current safeguards – Medicaid oversight bodies, local organizations such as Quality Trust and University Legal Services, and DDS’s customer services hotline – are not adequate to ensure that people have recourse when they believe their supports are falling short.  Many would agree that a more robust grievance process is desirable, although there are legitimate worries that the price tag associated with setting up such a process as part of this bill could slow down committee action, or even cause some councilmembers to oppose B22-0154 for budgetary reasons.  Advocates for the bill are hopeful that the committee could agree to establishing a timeline for setting up a grievance process in DDS, rather than stopping to negotiate the structure and price tag for a grievance system, so that the bill can move forward.

I’ll keep you posted on the bill’s progress.  In the meantime, PLEASE REACH OUT TO THE AT-LARGE MEMBERS OR TO NADEAU, TRAYON WHITE OR BRANDON TODD IF YOU’RE IN THEIR WARDS.  We need to move into the 21st century of disability rights in D.C., then get ready to help extend those rights to others who do not currently qualify for supports.  You can make a difference, now, by letting the council hear from you on this bill.

It’s harder, of course, for those of us in D.C. to affect the national debate on health care and Medicaid, since we have no direct representation at the national level.  But what you can do is contact anyone you know in the fifty states and urge them to write or call their senators over the 4th of July break.  Tell them that they need to do the right thing and keep Medicaid intact, for our community and for all Americans in need of that safety net.  We’re all in this together, and our country must not lose sight of this essential fact.

Before closing, a shout-out to Omonigho Ufomata, who has been such a diligent and responsive member on the DDS/SODA staff (see Acronyms you Should Know page!).  Best of luck to her as she moves on to the D.C. Department of Health.

And finally, we all need a party – especially a party in a great, great cause.  The Quality Trust ( is holding its annual gala and marking its 15th anniversary on July 15th at the Renaissance Hotel downtown.  It will be quite a bash, with some very special guests, and landlubbers will enjoy our new off-the-water venue.  Incidentally, the Quality Trust board (on which I serve) has added six new members over the course of the past year, and the organization is taking on ever more important responsibilities now that the Evans lawsuit has closed out.  Come help celebrate the successes of our local disability community and dedicate ourselves to the battles ahead!  I look forward to seeing you there – contact Phyllis Holton (Phyllis Holton ( or Courtney Clark ( for tickets and information.

Friday, June 9, 2017

No Overnight Successes

You’ll recall that I wrote at length last year about bill B-21-0385, the “Citizens with Intellectual Disabilities Civil Rights Restoration Act.”  (Enter “B21-0385” in the “Search This Blog” box to the right to read my past blog posts on this subject.)  Last year a scheduled hearing was postponed due to “Snowzilla,” and the committee chair, Yvette Alexander, never rescheduled that hearing.  Now she no longer is on the council. (Maybe there’s a relationship there?)

Well, there’s a new committee focused on human services, and it’s chaired by councilmember Brianne Nadeau.  NOW SHE NEEDS TO HEAR FROM YOU, and so do the other committee members!  (See the new page I’ve added to the right, entitled “D.C. Council Human Services Committee” – it will come in handy!)  Why do you need to contact them?  Because B21-0385 has been resubmitted as B22-0154, and there will be a hearing next Thursday, June 15, at 10 A.M. on the bill –  Testify in person if you can, at least submit written testimony if you can’t, and by all means write to the committee members, and to your own ward councilmember, to express support for this important bill.

If you’d like to learn more, the bill, here is the full bill - (if you get a pop-up window requesting a password, just close it and the bill will load).  Here too are some Frequently Asked Questions from the DDS website:  And again, the bill is B22-0154, the Citizens with Intellectual Disabilities Civil Rights Restoration Act.
Incidentally, I don’t much like the bill’s title either.  Honestly, when the city council first passed its 1978 bill to move people with disabilities in our city out of Forest Haven and into the community, they were ahead of their time, so “restoration” is maybe a little extreme.  But without question times have changed, the system is way out of date, and disability advocates in our city and throughout the country are working hard to get the courts out of their business so people can take their lives into their own hands.

I know, I know.  Some of you reading this like the current system.  But look.  There are only a little over 700 people still under so-called “civil commitment” in D.C., and the bill gives every one of them the right to maintain that status if they like their lawyer and don’t want to change.  In fact, the bill as resubmitted makes it even easier for those who are under civil commitment to remain under that system if they want to (and also clarifies that having a supported decision maker doesn’t prevent a person from designating someone to have medical and general powers of attorney as well, an issue dear to my heart).  So please, I implore the lawyers and others who have come to rely on the civil commitment system, by all means keep it for yourselves but don’t stand in the way of further progress in our city by opposing this bill.  Have what you want, but don’t force everyone to do the same.  That’s not fair.

And to the rest of you – the majority of my readers, I hope.  This is about rights, and progress, for those with disabilities in D.C. and their family members, friends and other supporters:  even if you wrote the council last year about the earlier version of the bill, WRITE AGAIN.  The time is now to get the hearing scheduled.  It won’t take you long.  And you can – please, we must – make a real difference.

Sunday, June 4, 2017

Good News

To quickly follow up on my last blog post:  Having written myself (as I know you did!) to the members of the D.C. council’s Committee on Human Services to urge them to restore cuts they had made to the DDS budget for FY 2018, I was elated to receive an email from committee chair Brianne Nadeau letting me know that those cuts had been restored!  Advocacy works!

But as I also pointed out in my last post, we need to create good news at the national level too, and that’s a harder slog  On June 6 at 11:30 beside the Capitol, there will be a rally by disability organizations - - urging the Senate to save Medicaid as it develops its own legislation in response to the devastating AHCA bill in the House of Representatives (  If you can possibly make it on June 6 for one hour out of your day, this is an important time to turn out!

I also want to make sure folks are aware that the Quality Trust’s 15th anniversary  gala will take place on July 15 at the downtown Renaissance Hotel.  Save the date! and contact Courtney Clark at or 202-459-4013 for more information.

Friday, May 26, 2017

Banding Together

There is such a lot of troubling news on the national front.  The House of Representatives has proposed a budget for the next fiscal year that would make drastic cuts in Medicaid funding, forcing the District and other jurisdictions to make wrenching decisions about how to support those in greatest need.  And the Trump administration’s budget seems to take the same approach.  It doesn’t mean everything is settled since the Senate hasn’t made its budget decisions yet, but the trends aren’t good. Even on the local front, I was disappointed to learn that the D.C. council’s committee on human services ( has made cuts in the already-lean budget proposed for the Department on Disability Services (DDS):

These proposed budget cuts, nationally and locally, make it even more essential to make our own communities as supportive as we can for people with disabilities and their families.  I’ve been a part of the planning team for D.C.’s Supporting Families Community of Practice for some time now, but this was the first year I’ve attended the national-level Supporting Families conference, in Kansas City, Missouri.  D.C. was among the original six jurisdictions receiving a national grant in 2013 “to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities (I/DD).”  Recently, eleven other states have joined the effort, and they participated along with the original six for the conference itself, followed by a day and a half of more in-depth sessions during which states shared their experience with the Lifecourse tools ( to help people and their families with individual planning.  The District’s efforts to bring local families together to develop and expand our own sense of community were highlighted in a variety of the sessions, on topics such as employment, supported decision making, and cultural and linguistic outreach.
A key aspect of the Kansas City discussions involved keeping the person’s life goals front and center, ensuring that waiver or other government supports, in addition to supports from friends, family and community, are provided within the context of the person’s own goals.  With my own son’s ISP meeting coming up, and given the frequent staff turnover that seems so much a part of waiver services, we’ve worked on his Employment Trajectory ( and his Supports Star ( to guide discussion for the coming year.  We put a two-year timeline on these to make clear that everyone in his life needs to make the effort, now, to help him move ahead. 
Even if you use a different type of planning tool, the point is to make sure the focus isn’t just on day-to-day supports or DDS requirements, but rather on the needs of the particular person and his or her community of support, paid or unpaid.  Also, when you’re dealing with the operational side of DDS, it’s a good idea for families and friends to inject this sort of planning into discussions, since even reforms that are being pushed by the State Office of Disability Administration (DDS/SODA) can be slow to get implemented by DDS operations personnel in DDA and RSA.
Families supporting families, and even creating more welcoming communities, can’t replace all the support that some people with disabilities need, though.  So I urge you to contact your ward and at-large council members – especially if they are on the human services committee – to advocate against the cuts to the DDS budget.  And if, by any chance, you are a reader who lives and votes outside of D.C. – where we don’t get voting representation at the national level – please let your senators know that you absolutely oppose cuts to Medicaid, which provides essential supports to people with disabilities and others who depend on this minimal “safety net” to get by.  
It’s never been a more important time for advocacy, so step up.

Tuesday, May 2, 2017

Small Change

Early in April, Mayor Bowser presented her “DC Values in Action” budget proposal for the 2018 fiscal year, which boosts funding for schools, housing and infrastructure but overall keeps a tight lid on funding increases even though the District is in extremely good shape financially.  In part this lack of ambition is because of the council’s decision three years ago to direct budget savings toward tax cuts rather than toward spending on D.C.’s neediest residents.  The D.C. Fiscal Policy Institute is proposing a “pause” in this approach and calls on concerned organizations to sign this letter to D.C. elected officials:

In line with the mayor’s priorities, the Department on Disability Services (DDS) has presented a steady-state budget representing only a 1.4% increase over the 2017 approved budget.  It’s a businesslike proposal that provides for continuation of core services.  Here is Andy Reese’s testimony which he presented at the April 25 hearing on the DDS budget:  You can view the entire hearing before the Human Services Committee on the D.C. council website,  I was out of town on the 25th, but yesterday I submitted my written testimony - – which expresses concern (as did others) about the continued failure of the mayor and the council to rectify the continued exclusion of developmentally disabled people without an intellectual disability from eligibility for waiver services.  Questioning by committee chair Brianne Nadeau on this subject, and Andy Reese’s response to her, focused exclusively on the cost issue, but here we are facing a budget surplus, so If not now, then when?

Andy told the committee that creating an Individual and Family Services waiver – focused on services with a lighter touch than under the present waiver - will lay the groundwork for plans to extend eligibility for Medicaid supports to the broader population of citizens with developmental disabilities in D.C.  DDS is currently focused on amendments to the current waiver which it will present to the federal CMS (see my page on acronyms for explanation) for approval in August.  (Incidentally, here is today’s Power Point presentation on the proposed amendments -  - and comments are due back to DDS by May 21.)  Once this is done, DDS will finally turn its attention to developing the IFS waiver, which has long been in the works and will probably take years before it has CMS approval.  The way I see it, by the time the IFSS waiver can show a track record of lowered costs to “justify” expansion of Medicaid eligibility, another five years at least will have passed.  Meantime, folks with autism and other developmental disabilities in need of supports, along with their families, will simply be fending for themselves. 

It’s obvious that this issue doesn’t have priority for elected officials at this time.  Personally, I think it’s high time for local organizations such as Quality Trust (QT), the Developmental Disabilities Council (DDC), the Georgetown UCEDD and Disability Rights D.C. to get organized to push DDS on this, because things are simply moving too slowly for those who are outside the system.  Lip service is no longer enough.  And yes, I’m on the QT board and recently named to the DDC, so both will be hearing my views on this subject.  

Friday, April 14, 2017

Building Community

I’ve written before about the importance of building circles of support.  All of us struggle to find the best way to ensure a rich life for our family members throughout their lifespan, and to provide the smoothest transition for them once our own lifespan is over.  D.C.’s Supporting Families Community of Practice ( has hosted quite a few discussions and training sessions on this theme, and helped many people and their families think through the best way forward for their particular circumstances.  Some of us are more fortunate in this regard, with immediate family or local relatives ready to help out along the way, and perhaps to step in once we’re gone.  Some have friends or church communities that can pitch in as well. 

Some also turn to intentional communities, like those created throughout the country by various groups of people who have common interests and want to socialize and share day-to-day responsibilities in a close living situation.  Over the years I’ve seen a number of efforts by families in Maryland to launch such communities on behalf of their adult children with disabilities, and a few have made headway.  Sooner or later though - particularly if they’re hoping for Medicaid funds to support some of those involved - they’ve had to make sure they aren’t working just to create communities of people with disabilities, but rather to facilitate their integration into the community as a whole.

This isn’t as straightforward as it sounds,though.  Just making sure people are living scattered among apartment buildings across the city is not enough to ensure community integration, as many with and without disabilities know very well.  This can still be a lonely and isolating way of life, especially since our society as a whole is still so far from enabling full participation by people with disabilities – in employment, social activities, and truly fulfilling opportunities to contribute to their communities.  So it’s easy to see why creating intentional communities has some attraction, and the concept shouldn’t be dismissed out of hand.  The crucial thing is not to be driven by parental fears or misgivings, but rather by what the person involved wants.  That way, I think it’s harder to go wrong.

A new group in town is grappling with how to forge intentional communities, both in D.C. and over the line in Montgomery County.  It’s not for everyone, and the families involved in its launch have brought personal resources to the table in order to get the process going.  Modeled on community-building efforts by parent groups based in Illinois, Integrated Living Opportunities, or ILO (, is forming clusters of families who provide mutual support to one another while helping facilitate social opportunities for their family members.  In some cases this may also involve people’s choosing to live in the same building or near one another and benefiting from some shared services, as has already happened with one of the Maryland groups.  ILO is also looking at ways to make sure solid supports will be in place for people when their parents or other family members are no longer around.  Some people involved in ILO have qualified for services under D.C.’s Medicaid waiver while others haven’t, but the organization is working with local providers and other agencies to make sure community integration stays in the forefront of their planning for everyone. 

Even though ILO is in its early days yet, it’s positive to see that D.C.’s disability community is maturing and expanding in some new directions as we move beyond Evans and find new ways to work together on issues that concern us all.

Friday, March 3, 2017

The Times They Are A-Changin'

I remember when I first heard Dylan, I was young enough to think progress was an inevitable fact of life.  Now I’ve lived long enough to understand that progress takes a lot of work.

I’d like to take the opportunity, then, to salute all of those who made it their business over the past 40 years to bring the District out of the dark days of Forest Haven, through the many years of poor services and stalled reforms, to the recent years of determined efforts and political will – to bring the Evans case, at last, to a close.  This accomplishment, and the new roads ahead, were a major focus of the performance hearing on February 15.  You can find the archived video, including many important witnesses and some very good Q and As from the new committee chair, councilmember Brianne Nadeau, and others, at  If your time or patience is short, here are some specific pieces of written testimony you’ll definitely want to read:  Andy Reese, DDS director,, and Jimi Lethbridge, Quality Trust,

I had serious laryngitis that day and was preserving my voice for the D.C. Statehood Coalition’s Lobby Day on the Hill (, so I didn’t testify in person.  I did, however, submit written testimony, and this time I chose to focus on an issue near and dear to all our hearts:  employment.  One positive way in which things are changing, as you see from Reese’s testimony, is that employment is becoming a much more prominent focus of efforts on behalf of local citizens with disabilities.  Still, we have far to go, and based on my family’s experience up to now, I offered these specific recommendations to the committee: 

-       The need to redouble efforts to reach DCPS students – even those in out-of-state placements – with effective RSA transition assistance, since it is infinitely harder to recoup delays after the school years.

-       The need for RSA and DDA to pay particular attention to the needs of young adults in their 20s who may not be students but who are nevertheless still establishing their direction in life and need substantial support in these efforts.

-       The need not only to pursue customized employment, but also to customize the ways in which RSA and DDA conduct “discovery,” tailoring it to the particular needs of the individual in order to help build confidence and let the person lead with their skills rather than being overwhelmed with bureaucracy.

-       The need for DDA to clarify for providers of Individualized Day Services the exact parameters of what they can and cannot do to assist people with career exploration.

-       The need for DDA to think very carefully about proposed deadlines on the duration of employment-readiness services under the waiver, in order to ensure sufficient flexibility in extending those services where that is clearly in the best interests of the person being served.

-       The need for DDS provider agencies to be aware of the full array of D.C. community resources and to ensure that front-line Direct Support Professionals receive this information and put it to use on behalf of the people they support.

-       The substantial work yet to be done through No Wrong Door and other DDS efforts to sensitize other departments of the D.C. government about their role in offering volunteer and paid work opportunities to D.C. citizens with disabilities.

I know readers have their own views about this topic, so feel free to join the conversation by commenting.  (You’ll need a Google email address.)

I’ve spoken here about ways in which things are changing locally, and mostly for the better.  However, I attended one of the mayor’s budget engagement forums ( last week, and it’s clear that some changes at the national level could be problematic for those of us who make our home here in D.C.  We all need to work hard, in the weeks and months to come, to make sure our city’s progress is sustained and strengthened.