A Day of Gifts

I spent most of today at the meeting of the Supporting Families Community of Practice (CoP).  If you haven’t attended one of these meetings, by all means go to the DDS website (www.dds.dc.gov) and click on the link to the CoP to the left under “Top DDS Pages.”  You’ll find a wealth of information that’s been presented at past meetings, and hopefully that will make you interested in attending next time.  Incidentally, next month there will be a special workshop, date and place not yet set, where family members can practice some of the person-centered tools presented at earlier CoP meetings.  Then in March there will be a regular CoP meeting focused on employment, at which RSA (What’s that? See my page on acronyms to the right!) will be present for a dialogue on current employment efforts and where we need to go from here.

Before talking about today’s meeting, I want to say something about the statement in my last blog post, “Giving Thanks,”about some Direct Support Professionals facing a decline in pay rates due to a new wage formula.  Some folks have questioned that, and I’ve tried to get a clarification from DDS since the subject is confusing and I’m no expert.  I haven’t yet gotten a clear statement from DDS, but based on conversation I think I now understand that those in DSP positions will not see pay reductions.  I invite a comment from DDS on my blog to make this even clearer.

So – today’s meeting.  The agenda was packed with a wealth of information – an overview of the first three years of the CoP’s work, a presentation on the recently-issued draft 2016 Olmstead Plan, an update on the District’s No Wrong Door initiative, a briefing on the proposed “Citizens with Intellectual Disabilities Civil Rights Restoration Act of 2015,” and a very lively discussion about ideas for the 2017-21 five-year plan for the Developmental Disabilities Council.   You’ll be able to find the key documents from the meeting on the DDS website very shortly.  I want to call attention in particular to the fact that the D.C. council hearing on the Civil Rights Restoration Act (see my November 15 post, “Overdue Change for the District”) is going to take place at 11:00 on January 27.  This is an extremely important piece of legislation which can be found at https://trackbill.com/bill/citizens-with-intellectual-disabilities-civil-righ/1203275/.  I’ll be discussing the bill in a future blog post and will definitely be testifying on January 27^th.  I hope you too will take this one seriously and either submit testimony, show up and testify, or both.

Besides serving as an important vehicle for learning about key initiatives such as this new legislation, the Supporting Families Community of Practice has evolved into an essential forum for people and their families to come face to face with decision makers, talk about the realities we face right now in trying to navigate the system, and push together for a better future.  Today there was some excellent give and take between presenters and participants, and Erin Leveton (erin.leveton@dc.gov) made a very good decision in the early afternoon to offer an “open mic” session.  Even though this shortened the sessions on the last two agenda items, the time was well spent in order to give folks in the audience a chance to raise burning issues affecting their lives. 

When the meeting ended, we all had to return to those present-day realities that remind us of the long road still ahead – I know I did!  Still, it was obvious that everyone present welcomed the uplifting tone of this day, and hopefulness is the torch that lights the way toward progress.  Happy holidays to all, and let’s carry that torch into 2016.

Giving Thanks

When you’re trying to advocate for change – for a person you love, for a community you care about – you can find yourself talking only about what isn’t working.  So I want to take a moment, with Thanksgiving upon us, to make a special point of thanking the Direct Support Professionals who work with my son, and those others throughout the city making it their business to keep those we love safe, happy and making progress in their lives.

As I write this I’m thinking of one individual who has been a part of my son’s life since he first came back home to D.C. last year.  In fact she’s the only person besides us who was in the room for his first ISP meeting during that first crazy week when he was starting to receive services.  His daytime community navigator has also been a rock, even when the role has been thankless.  There are many others, though.  Even when things haven’t been going smoothly at the management level, I’ve been impressed by the integrity, kindness and patience of almost every DSP who’s come through our son’s life.  They don’t have an easy job, and they often face the same headaches we do, along with quite a few more of their own.  One standard I’ve always tried to stick to is not to add to their headaches, but to treat the DSPs with respect and show my appreciation, since I know they’re on the front lines.

It may be even tougher for some of them to feel thankful this year, since a new formula D.C.’s been required to institute is going to mean lower rates of pay for some of the people providing support under the I/DD waiver.  I’m not an expert on all the job categories so I’m not sure who is directly affected, but it reminds me to be even more appreciative. 

So this Thanksgiving, have a wonderful holiday with your family – and thank a DSP!

Overdue Change for the District

I’ve been feeling pretty overwhelmed lately.  Getting on the same page with my son’s new supported-living provider has been a challenge, though things may be starting to improve.  My son keeps skipping out on his IDS program because it’s not meeting his needs and we’re waiting for DDA to offer any solutions.  And the D.C. Office of the Chief Financial Officer, for the third time this year, has misplaced my son’s monthly check – this time, lost it for good.  You know it: every day there’s some obstacle or headache standing in the way of the real work of improving the lives of those we care about.

So it helped me to lift my head above my day-to-day problems on November 12 and attend one of the DDS briefings about the legislation that’s been introduced into the D.C. council.  This bill, the “Citizens with Intellectual Disabilities Civil Rights Restoration Act,” addresses one of the major hurdles in the way of moving D.C. into the 21^st century of disability rights - namely the practice of commitment.  At this point, please look to the right and read my posts under the label “Past Reforms” (especially “35 Years and Counting” and “Where We’ve Come From”) so you’ll know what I’m talking about, and also take a look at the page “Acronyms You Should Know.”  Now you’ve done that, please keep reading!

About 1/3 of the people receiving services from DDA under the I/DD waiver still have to be “committed” by the D.C. courts in order to get those services.   We are the ONLY place in the country where this is still true, and I’ll admit that I find that horrifying.  When my son was found eligible to receive services, I was terrified he would have to be “committed” and that a lawyer would step in between him and us to decide what supports he needed.  Coming from that perspective, it was helpful to me to sit in the Shaw library and hear from people whose family members are under commitment:  it made me more understanding even though it hasn’t changed my mind.  There are people who still remember when the only way to get D.C. to keep people with disabilities safe was for the court to be watching over the government’s shoulder.  A huge amount has changed since that time, but it’s not hard to understand why some people like a system they know, especially if they happen to have a lawyer they like.  For people in that position, the bill allows people under commitment to continue if that is what they, or a trusted person, decide they should do.

And on the subject of “trusted person,” the bill also proposes an alternative to court-appointed guardianship, in the form of a Supported Decision Making (SDM) agreement to allow the person with a disability to formally designate someone who can help her/him make important decisions.  Supported decision making is an essential concept, and I also believe everything needs to be done to avoid guardianship where possible.  I’m going to be taking a very close look at the bill, though, to make sure the proposed SDM agreement doesn’t have unintended consequences where a different legal alternative to guardianship, the power of attorney, is concerned.  Both are needed.

Erin Leveton (erin.leveton@dc.gov) said the bill will soon be posted on the DDS website and that a joint hearing by the council’s Health and Human Services and Judiciary committees will soon be scheduled, probably in January.  I’ll do my best to keep folks informed about the timing, but between now and then, there are a couple of other important things to mark on the calendar.  The report to the council on what it would take to expand eligibility for services to all people with developmental disabilities will be submitted on December 1, and DDS has also promised to post that report on its website.  And the next meeting of the Supporting Families Community of Practice will take place on December 14. 

Speaking personally, I’m hoping that some of the challenges we’ve been facing will smooth out over the holiday season so that we and our son will see fewer obstacles and more person-centered solutions by the time the New Year rolls around. 

One Year In: Policy

Nothing moves fast in any bureaucracy, as I should know from my years in the federal government.  When it comes to addressing the needs of D.C. citizens with developmental disabilities I can get pretty impatient, but fair’s fair and it’s important to recognize where progress is occurring.

Predictably, DDS has made most headway on things that it could do without a lot of outside approvals.  Some significant accomplishments I’ve noticed: 1) DDS is about to issue new guidelines on how it will interpret the current IQ cutoff for DDA eligibility, which could have an impact on those who tested slightly above 69 before age 18.  2) DDS is pushing to expand people’s civil rights, by getting a bill introduced in the D.C. council to roll back the requirement for legal commitment (fingers crossed for council action) and by working with the Quality Trust, Developmental Disabilities Council, D.C. superior court and others to popularize alternatives to guardianship.  3) The Supporting Families Community of Practice (http://dds.dc.gov/page/dc-supporting-families-community-practice), which DDS co-leads, has successfully attracted new people and families, provided training on person-centered tools, and kickstarted efforts throughout the D.C. government to make ours a more supportive community for citizens with disabilities and their families.  4) DDS has made visible progress in providing more and clearer information on its website and elsewhere, arranging for those unable to attend to call in to some of its meetings, and exploring more weekend or evening meetings (let erin.leveton@dc.gov know if you like this idea).

Some things do require federal approval, and after more than a year of waiting, DDS has finally received approval from CMS for a large package of important amendments to the I/DD waiver (if you’re having trouble with the alphabet soup, see the page “Acronyms You Should Know” to the right of this blog post).  This has been a heavy lift, and now that it has come through DDA should be able to move ahead with developing the new and much-discussed Individual and Family Services waiver, joining DDA and RSA forces to help young people explore career paths and develop skills, and streamlining onerous documentation and other requirements that can undermine the goal of person-centered planning and implementation.   Laura Nuss and her new acting deputy for DDA, Jared Morris (thomas.morris@dc.gov) are promising to launch a DDA Advisory Council that will play a more meaningful role than the old Advisory Committee.  I’ve put in my application, and urge you to do so as well by contacting Alison Whyte at alison.whyte@dc.gov.

You may wonder why I haven’t said anything yet about closing out the Evans lawsuit and broadening eligibility for DDA services.  Laura Nuss isn’t going to forget Evans, and she was so confident about getting over the final hurdles that she didn’t put any new money into this year’s budget for Evans compliance.  On eligibility criteria, following the April budget hearing the council asked DDS for a study of the number of people with developmental disabilities and the costs associated with expanding services.  I understand that survey is under way and should have its findings by December.

One Year In: Personal

Even without a child in school anymore, fall is one of my busiest seasons.  But although I haven’t posted to my blog in a month, I’ve been thinking hard about how things have unfolded over the past year.  It’s actually been over a year - 16 months since my son began receiving services from DDS and 14 months since I started my blog.  But even if my timing’s a little off, the point is that it’s time to take stock.  In this blog post I’ll talk about where things stand for my son and our family; in the next, I’ll talk about policy issues.  And sometime soon I plan to post a page of acronyms to help you wade through the alphabet soup without having to go back to earlier posts.

So, on the personal front:

-          Supported living.  You know if you’ve been reading my blog for a while that our son recently transitioned to a new provider agency for his home support when the agency we’d chosen in 2014 sadly left D.C. after a little over a year (“Sometimes It’s Personal,” 8/4/15).  It’s too early to make a firm judgment about the quality of his ongoing care, but I can say that the promise of continuity hasn’t come true.  The new organization has changed the entire management team overseeing his apartment and his ISP, including one direct support professional (DSP) who was especially close to him.  Fortunately a few of his DSPs remain the same – for now – although this is small comfort since it could change anytime, as we’ve just been reminded.  Still, we believe he’s safe and has staff who mean well by him, and he has a reasonably compatible roommate as well.  We just wish we could rely on the promises made by both DDS and the new agency about a "seamless" transition.

-          Individualized day services.  IDS was a new option last year when our son began receiving services in DC.  Our experience is a clear demonstration of the difficulties this day program has had in delivering for the people who’ve chosen it.  It was originally intended as an alternative to work or other fixed-location day programs for people of retirement age who still wanted to be occupied productively during daytime hours.   Increasingly it’s also been chosen by people such as my son, who are transitioning from school and still in a period of exploration befitting their age.  Over the past year his IDS programming has helped our son get to know the D.C. community again, and better, after a four-year absence.  He has had a caring and sincere community navigator, and has sometimes had a companion who has obliged him to develop skills of compromise and collaboration.  However, our son needs an individualized but structured program of day supports, and the only structure he’s had so far has come from the courses our family has identified and enrolled him in.  Given the number of daytime opportunities available, and our own efforts to bring options to the provider agency’s attention, we’ve been hard pressed to understand the lack of creativity shown in developing an individualized program to address those needs.

-          Skills development and employment.  On this subject I refer you to my earlier post (“It’s About Work,” 8/21/15) which describes our discouraging personal experience with trying to cut through the bureaucracy and get the support our son needs to prepare himself for competitive employment.  A ping-pong match between DDA and RSA isn’t the way to help a person move forward in life.

Someone who’s been a very good friend to our son and our family told me a few months ago, “You don’t know it yet, but you’re at the beginning of a long process.”  I begin to understand what she meant.  But I’m an impatient person, and I’m continuing to push.  I hope you will, too.

So Long, It’s Been Good to Know Ya

Early this summer I wrote in a blog post (“Where’s the Follow Up?” 6/17/15) about the arrival of the new DDS deputy director in charge of the Developmental Disabilities Administration, Holly Morrison.  I had been told there would be a press release announcing her arrival, but I never saw one.  And when she left in August, it was treated like a state secret.

I had met with the director and her new deputy on July 31 about my son’s transition to a new provider agency (“Sometimes It’s Personal,” 8/4/15), as well as some of the policy-level issues I had raised in the June post I cited above.  It was a pleasure to see that there was going to be someone on the job who could take some of the burden off the DDS director and give DDA management the attention it deserves.  Following that meeting, Ms. Morrison jumped on a couple of important matters, about which she last communicated with me on August 17.  I emailed her back on August 18 and again on August 19, and when I got no response and saw others in DDS were taking her off the addressee list I began to wonder.  On August 26 I reached out and asked someone I thought might know whether she was on vacation or was already gone.  Sure enough, I learned she had left the week before.

So Holly Morrison came, and left.  Fast.  Her predecessor, Cathy Anderson, lasted much longer but also disappeared very quickly.  These quick departures are a matter of concern.  Too much is riding on the DDS director herself.  She needs a reliable deputy to oversee the DDA side of the operation so that she can look to the bigger stuff.  I don’t know why two deputies have moved on so quickly, and it may be a little embarrassing that Holly Morrison left after only two months, but that’s no reason to keep it secret.

There I was, sending emails to her, and no one in DDS bothered to mention she was gone.  The director and others included on my emails to Ms. Morrison were simply silent about her departure for days on end.  When I learned she had left and raised this silence with the director, Ms. Nuss told me she does not “post such things on the website nor send personnel announcements to families.”  There was no out-of-office message from Holly Morrison’s mailbox.  Is an out-of-office message a “public announcement?”  How long was I, and anyone else trying to reach her, supposed to wait before being told she was gone?  We were notified before our son’s service coordinator left recently, but the deputy director was gone for days and there was no communication.  This isn’t a matter of “personnel announcements to families,” but rather a matter of DC government transparency – or lack of it. 

And, in fact, I do believe that the comings and goings of someone as senior as the deputy director of an agency deserve a public announcement – on the website, in a press release and any other way DDS can get the news out.  Why wouldn’t DDS do that?

It's About Work!

A quick personal note:  Some of you who know our family have reached out with words of reassurance and comfort about the DDA transition we’re going through.  I appreciate that.  But I write my blog to shine a light on what isn’t working well, and I don’t want anyone to think we believe we or our son are the unfortunate ones.  Far from it.  Services are mostly going well for him, and because we are in his life we make sure of that.  So I hope I never sound like a whiner.

Now, down to business.  Or to be more specific, down to – work.  Because DC is an Employment First!  (http://dds.dc.gov/page/employment-first) jurisdiction, and that means we collectively want to be doing everything in our power to get anyone who wants employment into a job.  That’s the headliner, but oh boy, are there problems getting there – and some of those problems are definitely avoidable.  Again I’ll draw on our experience as an illustration (not whining!).

I wrote several months ago (“DDS:  Intentions Versus Reality,” March 1) that the minute I mentioned a meeting to talk about my son’s potential job interests, his then-service coordinator created roadblocks, insisting he had to fill out a bunch of paperwork and hand things over to RSA before we could even say the word “work.”  But that’s just wrong.  For one thing, there were plenty of team meetings that included the whole team, RSA included, when a previous service coordinator was on the job.  Second, our son receives Individualized Day Services (IDS), and DDA policy on IDS (http://dds.dc.gov/publication/individualized-day-services-final-rulemaking) specifically states that IDS should provide “Highly individualized, structured activities that  emphasize social skills development, and/or vocational exploration, and life skills training, within an inclusive community setting.”  Still, no matter how much we protested that it wasn’t necessary, both the service coordinator and his IDS provider pushed for a referral to RSA.  No harm done, we thought, so we went along with it.

The good side:  He got referred to a much more active and engaged vocational specialist than the one he previously had.  The bad side, which swamped the good:  He has a very specific type of interest, in many ways driven more by characteristics of the job site and comfort with the people he’ll be working with than by the general goal of employment.  The process of “helping” him, though, was driven by meeting after meeting, leading our overwhelmed son to become more and more anxious and leading the RSA specialist to come back and say she had to close his case since he was saying no.  Not too surprising.  In fact, completely predictable.

We had been asking for his slight, budding interest to be encouraged, approached creatively, within the IDS guidelines.  It was DDA and the IDS provider who insisted instead on opening the RSA door, and it was premature.  He needed to be led along, given an opportunity to explore the type of job site in which he had expressed possible interest – maybe through some volunteering, or through some structured discussion with people at likely workplaces.   Instead he got meetings and paperwork, which shut down the glimmer of interest he had expressed and gave him cold feet.  This narrow-minded approach isn’t the path to Employment First, and it set him back rather than moving him forward.  All he felt was a buildup of pressure and anxiety – the last thing he needed.

I haven’t written that much about RSA because so much of our experience has been on the DDA side.  I’ve heard testimony and had conversations with any number of you whose problems with RSA have had more to do with efforts on post-secondary education, but our experience suggests the problems are at least as acute when someone needs to get a toehold on the first rung of competitive employment.  Not everyone is suited to RSA’s current “off the shelf” employment options for people with disabilities.  Finding the right option, especially for a young person at the cusp of adulthood, requires some real coordination between DDA and RSA, some creativity in developing an interest into a real job option – and the ability to communicate with the person being served not in the way the bureaucracy dictates, but in the way that works for them.  

DDS Director Nuss Responds

After my last post I was asked by a reader what could be done to help strengthen and retain quality providers.  I posed that question to DDS and received a lengthy response from the director.  Surprised by the comprehensiveness of her message, I asked if I could quote her in my blog, which she agreed to.  So here it is (her words in italics):

I fully support your sentiment that we all need to demand high quality services from those who provide supports to our DC residents with intellectual disabilities.  It has to be something everyone embraces and that is always the hard part as you know.  We first have had the task of trying to raise expectations and providing training and education to our staff, providers and stakeholders about what “good services” actually means and looks like.  For D.C. that meant more than a clean home, food to eat and compassionate care.  Initially when I got here I think people were happy to gain that.  For the last eight years we have transformed our service system to one that at least expects and requires in rules and consequences that supportive and habilitative services be delivered, good healthcare be coordinated and maintained and health and safety be protected.  In the last two years we have immersed our staff in what Person-Centered Thinking really means, what our role is to advance rights, self-advocacy, choice and meaningful community inclusion.  And of course the Family Support Community of Practice has opened our ears and solidified our commitment to real stakeholder engagement and leadership by families and people we support to really shape the system of the future- today.

But despite this progress, the day to day reality for someone is only as good as the staff and organization is that provides the supports and services; and good outcomes only achieved when the people we support, family members, government personnel, community members and the provider agencies all demand, each and every day, that higher expectations are understood and valued, are capable of being delivered, and conversely low expectations are rejected in a loud, clear and consistent voice.  If we all worked each day to make that day an everyday, then we would feel confident that the good providers would grow, others would come and stay and those who don’t embrace the values and have the capacity to manage to those values would truly wither and die on the vine. 

As always, thank you for your advocacy.  I am confident D.C. will continue to demonstrate progress and its firm commitment to becoming a better, person-centered, inclusive and outcome orientated system of services and supports each day.

I don’t know if this makes me feel any better about the unintended transition to a new provider that we’re experiencing, but in general I agree with her that continued improvement will take effort from all of us, on a lot of fronts, and there’s still a long road ahead.  On Tuesday I’ll reach the one-year mark for my blog, and I’m sticking with it.  I hope to find you on the road with me.

Sometimes It's Personal

If you’ve been reading my blog for a while, you know that I stay away from personal specifics concerning my son.  Sometimes, though, our particular experiences with DDS or provider agencies can help illustrate the challenges that may face families even once a person is receiving support.  This is one of those times.

I’ve written in very positive terms about the provider agency that’s been supporting my son in his home since June of last year.  I had heard about their work in Pennsylvania and was glad they were coming to D.C.  Selecting them not only felt right for our son, but also like a positive step in helping DDA (the arm of DDS that administers the Medicaid waiver for persons with intellectual disabilities) to attract new provider organizations.  And while no agency is going to deliver 100% satisfaction, our son has seemed well satisfied and our family has had a very cooperative relationship with them based on shared values and a common vision for his future.

Two weeks ago we were hit in the face with the news that they were going to have to leave D.C., effective September 1.  Throughout the past year we had heard that referrals were going much more slowly than they had originally expected.  To a significant extent, this has been due to the fact that agencies with a poor record of support in D.C. have been fighting efforts to close them down, leaving often-vulnerable individuals in their care while the process plays out.  Our agency was ready, willing and able to receive a good number of those people, but time ran out.  The high degree of professionalism they brought with them, involving a great deal of mandatory training and standards for staff that went beyond DDA requirements, also required a level of budgetary outlays that they could not sustain if DDA was not referring new people to them.  So off they go.

We had known the news for ten days before we received official notification from DDA.  Even our service coordinator learned the news through the grapevine a week before his management communicated it.  Needless to say, it’s been a rough two weeks, and foremost in our minds is ensuring that our son, his roommate and others who have received such a high standard of service will not now be left high and dry. 

We’ve been assured of a smooth transition to another provider agency that hasn’t been working in D.C. for much longer than ours had.  We know little about the new organization, and so we remain apprehensive.  Time is very short, and we have to hope for the best.  The outgoing agency, the incoming agency, and DDA all have told us that existing local staff will remain in place.  Based on this, we’re providing our son all the reassurance we can that there won’t be disruption in his life.  Abruptly shifting to another provider at this stage would, we fear, only create the disruption we so much want to avoid.

Besides personal concerns, though, I think about what this means for efforts to ensure all providers in D.C. operate responsibly and professionally, and to see that D.C. is a welcoming jurisdiction for providers coming in from out of state.  Put simply, the D.C. provider community is too much of a “closed shop,” and those of us who care need to push to make sure everyone knows we have high expectations which must be met.  D.C.’s citizens with intellectual disabilities deserve no less.

Celebrating the Anniversary of the ADA

This week marks the 25^th anniversary of the passage of Americans with Disabilities Act – a historic event that continues to benefit all of us and those we care for.  The coming week is full of ways to mark this important landmark, and here are a few:

It’s not too late to attend the Quality Trust cruise on the Potomac, Sunday evening, July 19.  Tomorrow!  This is Quality Trust’s major annual fundraiser, so it’s a wonderful way to kick back and enjoy yourself while helping out an organization that does so much for folks with developmental disabilities in our community and beyond.  Here is the link for tickets: http://www.dcqualitytrust.org/category/news-events/  I’m on the Quality Trust’s board, and I’ll definitely see you there!

Here’s another:  On Tuesday, July 21, 10:00-11:00 a.m., at the Department of Labor, 200 Constitution Avenue NW, there will be a special conversation with former senator Tom Harkin, who was a major champion of the ADA when it was passed, and a spirited champion of persons with disabilities throughout his many years in the Senate.  To RSVP:  http://www.eventbrite.com/e/the-next-25-years-of-the-ada-invitation-registration-17591984098, or watch it live at http://www.dol.gov/dol/media/webcast/live/.

There’s a whole variety of DC- and federally-sponsored events going on in the next couple of weeks that the Department on Disability Services has put into one list:  http://dds.dc.gov/sites/default/files/dc/sites/dds/release_content/attachments/DDS_ADAFlyer_R2_0.pdf.  The Smithsonian in particular is hosting a large number of events and exhibits:  http://www.2540celebration.com/schedule-of-events/.

And finally, if you do nothing else, I hope you’ll read this awesome and touching testimonial by Mat McCullough, executive director of D.C.’s Developmental Disabilities Council:  https://usodep.blogs.govdelivery.com/2015/07/15/happy-anniversary-to-all-of-us/#more-9686.  He says it all, and so very well.

By Popular Acclaim

It’s not often I’m asked to blog about a particular subject.  This time, though, I’ve had readers in contact with me on a matter to which I hadn’t paid a lot of attention at first, and I’ve been convinced to put some views out there.  So thanks to those who’ve pushed me - this one’s for you.

Some readers may have seen the email from DDS inviting you to the upcoming “No Wrong Door Stakeholder Feedback Session.”  For those who didn’t see the email, the session is this coming Wednesday, July 1, from 1:00 to 2:30 at DDS headquarters, 1125 15^th St NW, just north of McPherson Square.  The purpose is described as follows:  “Do you or a family member receive services and supports through the Developmental Disabilities Administration (DDA)? Have you ever applied for services with DDA? If so, we want to hear from you! The District is in the process of getting feedback from District residents who have applied for or are currently receiving long-term services or supports, either for themselves or their family member.  We want to know what worked about the process of getting services and what didn’t work, so that we can start fixing it. Please join us for this feedback session!” 

I certainly encourage anyone who is interested in giving feedback in this way to attend, by all means. Contact Jestina Heroe (jestina.heroe@dc.gov) to RSVP.

But I wouldn’t be writing this if I weren’t concerned. 

First, as usual, I’m concerned that there doesn’t seem to be a vehicle for participation by those who can’t be available in person at the assigned time, and (I’m a broken record on this subject) there always needs to be a way for people to provide input if they can’t be there.  Second, though, in this case I’ve heard of quite a few folks who, available or not, aren’t so eager to come to DDS and discuss their experiences.  Their interactions with DDS have been and in some cases continue to be adversarial and unpleasant, and they’re nervous that openly discussing their experiences may only result in a worsening of relationships, or even of the services they or their family member are receiving. 

This leads me to suspect that most of the folks who’ll show up next Wednesday are those who are pleased with their experience and satisfied with the services they’re getting.  Those with misgivings (or a scheduling conflict) are likely to stay away. 

So let me speak to the well-intentioned DDS staff – many of whom I know from the Supporting Families planning committee – who are putting this together:  If you limit the opportunity for feedback to what you hear in Wednesday’s session, you won’t get the valuable input you’re hoping for.  I know it’s more difficult to arrange, but if DDS is really looking for honest feedback and intends to take action in response to it, there needs to be a vehicle for people to provide feedback without identifying themselves.  Best of all would be an anonymous standardized survey, but if not that, find some way for the people who don’t want to step forward in person to be heard.  They’re the ones most likely to give you the information you really need to hear.

Where's the Follow-up?

I write you a bit frustrated today on several fronts, and although it doesn’t add up to a single substantive theme, I’ve decided it all fits into one irritant:  lack of follow-up.  And that is, actually, a theme in itself.  So let me launch:

The new DDS deputy director for the Developmental Disabilities Administration (DDA) is named Holly Morrison, a former executive with Mosaic (http://www.mosaicinfo.org/). Welcome aboard, Ms. Morrison, although I wish it were DDS and not me announcing your arrival.  Three weeks ago I was actually promised a press release when the new deputy came on board, but – no follow-up.  Still I managed to find out about her appointment, even though I can't readily find it on the DDS website either.

After my blog post on May 20 (“Setting the Record Straight”), I did, in fairness, get some immediate updated information on the estimated headcount for DC citizens with developmental disabilities, but I was promised information on the other issues I raised and received no follow-up.

I’ve spoken favorably in the past about initiatives being taken in the Supporting Families Community of Practice, and based on the planning meeting, I announced in my blog on April 3 that the next CoP meeting would take place in June, with a focus on community supports and an exciting keynote speaker from the Bowser administration.  I missed the June 3 planning call, but when I found out what had happened on the call, I learned there was no June meeting planned and no clear plan for follow-up.

On January 5 (“DDS New Year’s Resolutions”) I noted the need to “facilitate payments to DDA by individuals’ designated representatives.”  Representative payees trying to do the right thing by sending monthly payments to DDS have to write physical checks which must be transferred among offices and which get lost about a quarter of the time.  If these checks aren’t cashed by the end of the month the individual’s asset limit for Social Security can be in jeopardy.  This is a disincentive to Supported Decision Making since it can make folks give up and transfer representative payee status to DDS.  I’ve been pushing for nearly a year to get DDS to establish a system for electronic transfer of these payments but…no follow-up.

I wish I couldn’t go on with other examples.  I could, but I’ll stop here.  Yes, OK, DDS has a lot on its plate.  Yes, OK, a lot has been accomplished.  Yes, OK, unforeseeable things do come up.  I’ve worked in a government agency, and I know. But then don’t overpromise.  But then don’t require requests to go to the top of the organization for remediation or response.  But then set priorities, focus on them, and really follow up.  The problem is chronic, and needs attention. 

Ms. Morrison - can you help?

Change is in the Air (but not quite enough)

The D.C. council is still chewing over the FY16 budget, but it looks as though DDS will make out all right when the council takes its final vote the middle of this month.  I’m glad to see this, although the budget hearing in April (“A Complicated Picture,” April 30) pointed up some real challenges on which I hope we’ll see significant improvement between now and the next performance review eight months from now.  Rumor has it that Laura Nuss soon will be getting a new deputy to oversee the Developmental Disabilities Administration (DDS/DDA), and that person will still have her work cut out:  wrapping up the Evans lawsuit, giving real meaning to person- (and family-)centered planning, determining what DDA itself can do to facilitate supported decision making, and – oh yes! – getting D.C. to reach those who do not get any coverage at all under the waiver. 

After my last posting (“Setting the Record Straight,” May 20), Erin Leveton (erin.leveton@dc.gov) was good enough to forward me an email from the National Association of State Directors of Developmental Disabilities Services (NASDDS), citing a study by the University of Minnesota that estimates the number of persons with developmental disabilities in D.C. (in 2013) at 9,632.  So my original estimate of 10,000 turns out not to have been that far off after all.  Still, when asked by Health and Human Services committee chair Alexander whether there is any legislation DDS will be submitting to the council in fiscal year 2015, DDS only said it would be seeking a little more flexibility on the definition of “intellectual disability.”  This (which may or may not really require legislation) may indeed allow a few more people who don’t fall strictly under the IQ limit of 69 or below to become eligible.  It doesn’t show the ambitious thirst for equity that disability advocates showed in 2009-2010, though, when they tried to get the Developmental Disabilities Reform Act (DDRA) passed by the council.  

With a new DDA deputy, at least DDS will have more high-level folks to focus on this critical issue, along with some of the issues raised in hearings before the Alexander committee this past spring.

Setting the Record Straight

I’ve been writing this blog for nine months now, and I find there are things that don’t look completely accurate anymore.  Since I want to give out correct information, in this post I want to provide a few updates:

• In several posts I’ve said that the closeout of the  Evans lawsuit was nearly complete.  In September I said it was only months away, but things are unfortunately moving more slowly than expected.  In her most recent budget testimony Laura Nuss specified that DDS still has six of the 70 so-called “outcome criteria” to resolve before the case will be closed.  Nuss says she has made a commitment to the new mayor, and she likewise promised the council last month, that this will happen by fiscal year 2016 (which will run from October 1, 2015 through September 30, 2016).   Immense progress has been made over the past year on this 39-year-old lawsuit, but unfortunately the time has not yet come for court oversight of D.C. disability services to be lifted.

• I’ve also spoken a number of times about a new waiver, the Individual and Family Services (IFS) waiver, which would provide more flexible in-home supports than the current waiver does.  (This wouldn’t change the eligibility requirement of intellectual disability.)  There’s mostly been silence on this waiver for months now, but the last I heard DDS was going to turn its attention back to it once the state transition plan on compliance with the federal rule on home and community based waivers had been submitted (see March 10, “Why Friday the 13th Matters”).  The transition plan went to the federal Center for Medicare and Medicaid Services in March, so I hope we’ll be hearing soon about progress on the IFS waiver.  If someone from DDS can provide an update, feel free to comment in response to this post!

• I’d also like to provide some clarification about my own information concerning the likely number of people with developmental disabilities living in D.C.  In “The Way Ahead,” January 26, I used the proportion of Americans with developmental disabilities nationwide to estimate that there should be around 10,000 D.C. citizens with a developmental disability.  Since then I’ve become aware of a report commissioned by DDS and the DDC in 2011 that approached this in a more analytical way and came up with a number closer to 9,300.  Just this week I’ve heard from a local disability group that the number probably falls within a range of 8000-10,000 D.C. citizens.  Even though the overall number may turn out to be slightly lower than the 10,000 I estimated – we really don’t know what the right number is – and even though not all of those people would require Medicaid waiver services, it’s a long way between any of these numbers and the less than 1700 people now getting services from DDA under the waiver.

A Complicated Picture

Sometimes it pays to stay until the end. I was reminded of that at yesterday’s hearing on DDS’s FY 2016 budget before the DC Council’s Health and Human Services committee, chaired by council member Yvette Alexander (Ward 7).  DDS director Laura Nuss testified (https://drive.google.com/file/d/0B489LE-2ltOgcEI0dWVZd1ZPTFU/view?usp=sharing) after seventeen other witnesses, and the chair’s very last question to her touched on eligibility criteria for waiver services and the inclusion of persons who have a developmental disability but not an intellectual disability.  The director indicated that DDA is planning to institute greater flexibility with respect to the IQ cutoff of 69 or below, but on expanding eligibility, I was concerned to hear her reply that “a better financial climate for the city” is required.  I’ve heard Laura speak much more forcefully on this subject before, and I’m concerned her answer may mean that expanding Medicaid waiver services to other D.C. citizens in need is not going to be a budget priority for the new mayor.   I continue to be encouraged, however, that the issue has the committee chair’s attention, and hopefully she’ll keep the light shining on this grave and longstanding concern.

The budget hearing ranged across a great variety of topics.  Witnesses’ testimony fell mainly into the following categories (recall that DDA and RSA both fall under the DDS budget): 

-          -- Advocates applauding DDA and strongly supporting its budget.  Several individuals currently benefiting from the DDA waiver (almost all of them receiving services from one particular provider) spoke out forcefully in this regard.  In my own testimony, I advocated in favor of the proposed budget to ensure that DDA can meet its current commitments to waiver-eligible individuals, but at the same time I pointed to the need for services to expand to others who are not currently eligible.

-          -- Advocates for the proposed increase in the RSA budget.  Several of these witnesses were from organizations that have received funding from RSA, and in the interest of transparency, I believe the council should require witnesses to disclose any such past, present, or potential financial interest in their testimony.  These favorable commentaries were challenged by at-large council member Grosso, who said he has heard from many individuals – some of whom testified in February at the performance review hearing - about substandard service from RSA.

-          -- Critics of DDS, a number of whom spoke about reimbursement rates and other policies affecting DDS providers while others addressed problems with the department’s internal personnel policies.    At-large council member David Grosso was especially vocal about this last issue, on which several individuals had apparently approached him personally.  One parent also spoke eloquently about the difficulties she has had in gaining waiver eligibility for her daughter and her ongoing struggles in getting appropriate, community-based services from DDA.  Committee chair Alexander asked whether my personal experience was similar, and I confirmed that it was, although this family’s ongoing challenges with DDA are more significant than those we’ve encountered recently.

I realize this summary won’t provide enough detail on the particular concerns that you may have, and I encourage you to watch the video of the hearing at http://dc.granicus.com/MediaPlayer.php?view_id=32&clip_id=2649.  The hearing actually starts about 20 minutes into the video and begins with an initial panel from the Office of Disability Rights.  Then come several panels of witnesses addressing DDS issues, and DDS director Nuss’s testimony starts around the beginning of the third hour.

Finally, a word on council members’ attendance.  Committee chair Alexander was of course there for the whole time, and very engaged.  At-large member Grosso had to leave a couple of times, but had a staff member there throughout and was obviously extremely active and interested in the subjects covered, especially but not only where he saw overlap with the Committee on Education, which he chairs.  Ward 1 member Brianne Nadeau was briefly there at the beginning of the hearing and made a statement.  And the remaining member of the committee, Mary Cheh, as in February, won the prize for her utter, complete, and unexplained absence.  I hope she does not imagine there are no persons with disabilities in Ward 3.

In light of some of my past postings about the need for DDS to get more information online, I’d like to give Erin Leveton a shout-out for having provided the link to the Power Point presentation on the budget:  http://dds.dc.gov/node/1049692.  You should find this quite a bit more readable than the version I scanned for my last posting.

It Takes Money to Make Things Run

This past Monday, April 13, I attended the first of two briefings by Laura Nuss on the mayor’s FY2016 budget proposal and, in particular, the budget proposal for DDS.  There will be a second briefing on Monday, 4/20, 3:30 at the Anacostia library, 1800 Good Hope Road SE - attend if you can.  On the DDS website you’ll see an announcement of the 4/20 meeting, but if the Power Point is there I can’t find it.  I’ve scanned my hard copy to share it with you:  https://drive.google.com/file/d/0B489LE-2ltOgMUZUbU8wbzBpTHM/view?usp=sharing

The good news:  In a fiscally constrained budget environment, the DDS budget held up well.  There is even a slight proposed increase of $1.7 million for RSA to allow compliance with new federal requirements for transition programming for in-school youth without squeezing other parts of the RSA budget.  The mayor also accepted the argument that most of the DDS budget is D.C. matching with federal Medicaid funds to support the approximately 1650 people currently served under the DDA waiver.  Since D.C. has found these people eligible, the funds have to be provided.  Hopefully the D.C. council will also understand this.

The bad news:  This is, as I said above, a fiscally constrained budget environment.  The mayor has submitted a request that not only involves cuts in some agency budgets, but also proposes an increase in the D.C. sales tax to fund affordable housing.  This means that any thought of developing a waiver to serve people with developmental disabilities who don’t meet the IQ requirement for an intellectual disability is, for now, off the table.  Why?  Because the D.C. matching funds for these additional people would create a new budget requirement.  These are realities.  And until the mayor, and the council, hear that we want justice for citizens with developmental disabilities in our city, the situation is not going to change, even in FY 2017 or beyond.

You have a chance to start being heard on this issue.  On April 29 at 10 a.m., the D.C. council’s Committee on Health and Human Services will hold a hearing on the DDS budget – room 500 of the Wilson Building.  Council members need to hear that we want the council to support the proposed funding for DDS in the mayor’s FY 2016 budget, as the minimum necessary to meet current requirements.  But we also need council members to hear that we want something even better in FY 2017.  So do one or all of these things:  contact Rayna Smith at rsmith@dccouncil.us to get your name on the list to testify in person on the 29th; write her at the same address to say you plan to submit written testimony; or write your council member (http://dccouncil.us/council) to say you support the DDS budget request.

The squeaky wheel gets the grease, folks.  So squeak!

Supporting Families Community of Practice

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

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

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

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

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

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

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

Why Friday the 13th Matters

You should have your eye on this Friday, March 13 for two reasons. 

·      One is the deadline for public comment on the proposed D.C. transition plan for compliance with the federal rule on home and community based waivers:

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

The DDA transition plan for the I/DD waiver is a part of this document, and the DDA plan is what I talked about in my blog on November 24.  This is your opportunity to comment before the full plan is submitted to the federal government.  There was a public comment session last month, but there wasn’t much advance notification.  More information on the federal rule itself can be found at www.hcbsadvocacy.org.  

Send written comments on D.C.’s proposed transition plan to Trina Dutta at the D.C. Department of Health Care Finance, 441 4^th St. NW, 9^th Floor, Washington, D.C. 20001, or email comments to the email address dhcfpubliccomments@dc.gov.  This plan is going to affect you or your loved one, so it deserves attention.

·       Also, March 13 will be the next session of the Supporting Families Community of Practice, taking place at DLA Piper, LLP, 500 8^th Street NW from 9:30 to 3:30.  This session will be focused on supported decision making (SDM), an important alternative to formal guardianship (www.supporteddecisionmaking.org).  As I mentioned in my blog “Organizations You Should Know” last month, D.C.’s own Quality Trust for Individuals with Disabilities recently received a competitive HHS grant to develop a national resource center for supported decision-making.  The head of the Quality Trust, Tina Campanella, will attend the Community of Practice meeting on Friday to talk about and field questions about supported decision making.  I don't know yet whether there will be a dial-in or other remote option for participating in the session, but if I learn there is I’ll share that information.

Attend the Community of Practice session on Friday if you can, and if you have comments on D.C.'s proposed transition plan – last chance!  only three days! – send those comments by the 13^th too. 

DDS: Intentions versus Reality

As discussed in my last blog post, I testified on February 20 before the DC Council’s Committee on Health and Human Services.  Here’s my testimony: 

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

Although the chair, Yvette Alexander, was very engaged and asked a lot of the right questions, and council members David Grosso and Brianne Nadeau at least attended for part of the time, I was personally extremely disappointed that my council member, Mary Cheh, didn’t show at all and sent no staff.  I was encouraged by Ms. Alexander’s concern about the limitations that current legislation places on eligibility for DDA services, but testimony by Sandy Bernstein of University Legal Services (ULS) and Tina Campanella of the Quality Trust also pointed to the fact that DDA’s intake unit is turning away even individuals who meet the stated IQ requirement under current law.  And Rohini Singh from ULS, along with several parents, testified about the consistent obstacles people are encountering when trying to obtain support from RSA, the other arm of DDS.

DDS director Laura Nuss testified after everyone else, and her head of RSA, Andy Reese, was with her to field questions afterward.  Here is Laura’s testimony:   

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

Much of what she had to say was positive, and encouraging.  In particular, I appreciated what she and Andy had to say about person-centered thinking and the enhanced priority given to DDA and RSA working in tandem to support people.

Unfortunately, within just a few days of her testimony, I encountered the reality, and the frustration, that we too often encounter as family members in our direct dealings with DDS staff.  I repeated a request I had made to my son’s DDA service coordinator in December to arrange a brief meeting about how best to develop and encourage his job interests – not yet to help him get a job.  We hoped this meeting would include our son’s current service providers as well as his RSA vocational rehabilitation specialist.  Although our son’s prior service coordinator regularly arranged meetings which RSA also attended, and although the VR specialist has expressed a willingness to be part of such a meeting, our son’s current service coordinator refused to do so.  In fact, instead of agreeably stepping forward to set up a time and place, this coordinator instead lectured me in an email concerning my “confusion about how DDS’ systems work.”  Apparently, the mere mention of the word employment, in this person’s mind, automatically means the ball gets pitched to RSA.  

Rather than DDA/RSA coordination, I get a game of “hot potato.”  All this just to get six people into a room?  This is neither person-centered nor a good demonstration of DDA/RSA teamwork.

I said - perhaps too kindly - in my testimony to the council, “DDS needs to expand further its internal training in person-centered approaches to staff in both DDA and RSA, and establish systems and incentives that require both arms of DDS to work together as a team in supporting the people they serve.”  I believe that Laura Nuss would agree with my statement, so why do so many of her staff resist it?  This needs work, and pronto.

Organizations You Should Know

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

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

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

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

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

The Way Ahead

Some of you may have noticed the following article in the Post last week:  http://wapo.st/1ys00uL.  This seems to confirm that Laura Nuss will be remaining as DDS director, as I’d already heard unofficially.  I still haven’t seen a formal press release from the mayor’s office, but DeBonis usually gets it right.  We also should all be paying attention to the new chair of the D.C. council’s Committee on Health and Human Services, Yvette Alexander.  The budget season is coming up, and on February 20 at 10:00 a.m., she will be chairing the first of two hearings on DDS.  This one is on agency performance, and a later one will be on resources.  Anyone can sign up to testify in person or submit comments:  this is an opportunity to start letting the council know we’re out here and we care.

The viewing of the national Supporting Families Community of Practice webinar and subsequent D.C. discussion took place on January 22.  If you weren’t able to tune in, you can find the webinar at http://supportstofamilies.org/cop/innovations-webinar-series-kickoff-overview-of-the-lifecourse-framework/.  For me, the most important information presented was that, of the 4.7 million American citizens with developmental disabilities, only 25% are receiving services from their state DD administrations (“state” includes DC for these purposes, as we hope will someday  be the case in reality!).  Most of the rest of the presentation had to do with how society as a whole needs to change (and, thankfully, is changing) so that broader supports are available from sources other than state DD offices.  This is a worthwhile effort, particularly in view of the need to continue integrating people with disabilities into our society at large, and the fact that Medicaid and other budgets to fund supports are not expanding much if at all around the country.  However, we can’t lose sight of the fact that state-level services are very much needed by some people not currently receiving them, and we can’t give up on getting those services to them. This is not to say that all 4.7 million Americans with developmental disabilities nationwide would need state DD services, but it’s likely there are quite a few among the 75% not receiving such supports who do indeed need them.

According to my calculations, based on D.C.’s population of about 650,000 and the national rate of 1.58% of the population with a developmental disability, the number of people with developmental disabilities in D.C. could be estimated at about 10,000 citizens, and the number receiving services under the current waiver is under 16% of that, compared to 25% nationally.  This does mean there’s a need for more resources, and we need to be sure the council hears this loud and clear.  However, it’s also true that with only one Medicaid waiver available for people with developmental disabilities, we don’t have a system that’s tailored properly for the different needs of citizens with developmental disabilities in D.C.  So while supports are required for more people, we also need smarter supports in the form of additional types of waivers.

So let’s – all of us – keep the pressure on to address these issues.  Pitch in, folks.

It's You I'm Talking to This Time!

In my last post I offered New Year’s resolutions for the Department on Disability Services.  I hope DDS will take these on board, since much progress is needed.  Progress, though, is a two-way street – or maybe even a four- or five-way intersection – and we can’t just sit back and wait for DDS to think of everything.  

I’ve talked in earlier blogs about the Supporting Families Community of Practice.  D.C. is one of five jurisdictions in the country that got a national grant to explore ways of bringing better supports to families, who nationwide provide the bulk of support for people with disabilities (as we know!).  As the number of people with disabilities increases while government budgets stagnate, there’s a need for a lot more creativity in how we approach support.  The D.C. CoP is chaired by DDS and the non-profit monitoring organization, the Quality Trust for Individuals with Disabilities, with a core group of local disability organizations (I was recently invited to join the organizers as a parent advocate at planning sessions for the public CoP meetings, and attended my first one on December 10.)  Attendance has grown at each successive meeting of the D.C. Community of Practice, but as I continue to remind the organizers, meetings held in the middle of workdays just aren’t always convenient for family members or people with disabilities themselves.  So far there haven’t been good mechanisms for people who can’t attend to participate by webinar or even on a conference line, nor a good means for people to give input if they weren’t able to attend.  There are sometimes technology limitations, but for the CoP, as for many meetings that DDS hosts on other topics, these limitations need to be overcome.

This is where you come in.  There's a meeting scheduled for Wednesday, January 22, 2-4 (441 4^th Street, NW, Room 1107), that will focus on educating attendees about the Lifecourse Framework for achieving systems and individual change.  A webinar will air, followed by discussion among the participants.  In the planning session, I strongly urged organizers to make available an option allowing people who can’t attend in person to participate, and arrangements have been made to allow remote viewing of the webinar:  https://nasddds.adobeconnect.com/familynetworks/, and (888) 407-5039 for audio (you need to call in for webinar audio, apparently).  I urge any and all of you who can to take advantage of this.  Up to now, service providers have not been a part of the CoP, but beginning at this meeting they will be.  It’s important for families to remain the dominant voice in these discussions!

The issues being discussed in the CoP matter to you – how to get providers, doctors, teachers and others to see you or your family member as a person rather than a disability; how to make local service delivery more responsive to people’s individual needs; how to bring our local laws into the 21^st century and get supports to people who don’t currently get any.  But your voice needs to be heard.  Participating in meetings of the Supporting Families Community of Practice is one way.  And whether or not this works for you next week, be in touch with Erin Leveton (erin.leveton@dc.gov) to let her know that it’s a priority for all future meetings of the CoP, and other meetings hosted by DDS, to allow participation by those unable to attend in person.  Also ask for minutes, video, documents, etc., posted on a website or made available by other means to anyone with an interest, starting with you!  This is a good opportunity to advocate and be heard, so speak up!