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.