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 (https://blog.thearc.org/2017/09/14/arc-responds-graham-cassidy-heller-johnson-health-care-proposal).  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 GCHcomments@finance.senate.gov.  It only takes a few minutes and it’s important!

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:  https://tinyurl.com/ybfv3n4o.  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 (https://dds.dc.gov/page/dc-supporting-families-community-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 (http://www.ablenrc.org/about/what-are-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 https://savewithable.com/dc/home/plan-benefits.html, 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 (https://osse.dc.gov/service/career-and-technical-education-cte).  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 (https://tinyurl.com/y75822ov).  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?

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.

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:  http://wapo.st/2eUqT9C.

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.

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 (https://tinyurl.com/y8m2pzaa) and Street Sense (https://tinyurl.com/y7qd24du).  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 (https://dbh.dc.gov/service/consumer-rights).   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 (http://www.ablenrc.org/about/what-are-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 9^th Street NW, reception beginning at 6:30 p.m.  It’s not too late to get tickets:  contact Courtney Clark, CClark@dcqualitytrust.org.  I hope to see you there!

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:  https://tinyurl.com/y8yajn8q.  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 21^st 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 4^th 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 (https://www.dcqualitytrust.org) is holding its annual gala and marking its 15^th anniversary on July 15^th 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 (pholton@dcqualitytrust.org) or Courtney Clark (cclark@dcqualitytrust.org) for tickets and information.

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 – http://dccouncil.us/events/human-services-public-hearing1.  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 -http://lims.dccouncil.us/Download/37567/B22-0154-Introduction.pdf (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:  https://dds.dc.gov/sites/default/files/dc/sites/dds/publication/attachments/CIDCRRA%20FAQ.pdf.  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.

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 - https://tinyurl.com/yc7k9339 - urging the Senate to save Medicaid as it develops its own legislation in response to the devastating AHCA bill in the House of Representatives (https://www.congress.gov/bill/115th-congress/house-bill/1628).  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 15^th anniversary  gala will take place on July 15 at the downtown Renaissance Hotel.  Save the date! and contact Courtney Clark at cclark@dcqualitytrust.org or 202-459-4013 for more information.

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 (http://dccouncil.us/committees/committee-on-human-services) has made cuts in the already-lean budget proposed for the Department on Disability Services (DDS):  https://drive.google.com/file/d/0B489LE-2ltOgMWxWUHJjWHNxNW8/view?usp=sharing.

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 (http://www.lifecoursetools.com/planning) 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 (http://www.lifecoursetools.com/wp-content/uploads/Life-Trajectory-Worksheet-updated-february-2017.pdf) and his Supports Star (http://www.lifecoursetools.com/wp-content/uploads/integrated-supports-star-worksheet-updated-february-2017.pdf) 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.

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:  https://tinyurl.com/kcacw8y.

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: https://tinyurl.com/kcmv5kh.  You can view the entire hearing before the Human Services Committee on the D.C. council website, www.dccouncil.us.  I was out of town on the 25^th, but yesterday I submitted my written testimony - https://tinyurl.com/ld8ytcb – 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 - https://tinyurl.com/lppupr6  - 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.