So Much Accomplished, So Much More to Do

Last week was a great one for shining a light on all that’s been accomplished for persons with developmental – mainly intellectual – disabilities over the past decade.  As I reported in my last post, WAMU-FM (88.5) broadcast an entire four-day series by reporter Martin Austermuhle focused on the road the District has traveled since Forest Haven, “From Institution to Inclusion” (https://wamu.atavist.com/from-institution-to-inclusion).  I hope everyone will take the time to fully explore all the written, audio and video materials accompanying the series.  You’ll come away with a very good historic understanding of the road D.C. has traveled and the meaningful progress that’s been made.  In addition to that series, on Thursday of last week Kojo Nnamdi interviewed Laura Nuss, DDS director, and Tina Campanella, CEO of the Quality Trust (https://thekojonnamdishow.org/shows/2016-03-17/better-served-a-turnaround-for-d-c-s-disability-services) – though unfortunately too briefly to allow for call-in questions.

I’m extremely happy that Austermuhle did such a comprehensive and thoughtful series, heard throughout the city.  However, as he wrote in an “Author’s Note” to the introduction:  “Intellectual disabilities are a subset of developmental disabilities, but not all people with a developmental disability have an intellectual disability.”  This is very true, and for that reason I was quite disappointed when he didn’t acknowledge that only those found to have an intellectual disability are eligible for waiver services in D.C., leaving those with different types of developmental disability left out of the system.   For more on this topic, see my earlier posts labeled Past Reforms and Advocacy, in particular “As Budget Time Approaches“ (3/14/16), “It Takes Money to Make Things Run” (4/18/15), and “Thirty-five Years and Counting” (12/19/14).


This leads to my second misgiving about the series – namely, it was so focused on progress made since the dreadful days of Forest Haven and group homes that it glossed over significant current challenges with service delivery and the lack of access to services by so many in D.C.  No question that employment is an essential issue, but the sudden shift in the story to employment programs in Washington state left the impression that there are just two sides to the coin:  deinstitutionalization and employment.  We know it’s much more complicated than that.  While there were a few broad references to the complexity of community integration in the report, the hasty conclusion left so very much unsaid.  I hope Austermuhle will do a follow-up before too long which takes a broader and longer-range view of D.C.’s challenges going forward. 

As Budget Time Approaches

The DDS performance review hearing before the Council’s Health and Human Services committee took place on March 10.  And first, I want to say how happy I was to see some of you there.  Secondly, I wish more folks had been there to testify.  It’s hard to overstate how important it is for the council to hear from individuals who are touched by DDS, either directly or as family members/friends. I hope some of you sent written testimony even though you couldn’t be there.  You’ll have another opportunity when the same committee hears testimony on the DDS budget for fiscal year 2017 on April 20:  let Malcolm Cameron (mcameron@dccouncil.us) know if you plan to testify or submit testimony. 

There was a substantial amount of discussion at the hearing about bill B21-0385 (“A New Year, A Chance for New Beginnings,”  January 19), and in her remarks Chairperson Alexander seemed to favor the naming of a DDS ombudsman as a way to alleviate some of the concerns being expressed by the families of people who now receive services under court commitment.  No mention was made about rescheduling the hearing that was cancelled due to the January snowstorm, but on the fringes of this hearing Kenyan McDuffie, the chair of the judiciary committee, which also has jurisdiction, was meeting separately with people who favor that bill (as I do).  Please reach out to your council member to express your viewpoint on this important piece of legislation that will help shape the future of disability rights in the District!

The majority of the questioning by council members Alexander and Nadeau – the only members who came, although Grosso had staff there through most of it – was about RSA issues, particularly transition services, staff counseling and caseloads.  There was also questioning about DDA, although less than last year it seemed to me.  I was personally disappointed that, although last year she was very engaged on the subject, Chairperson Alexander seemed much less energized, even a bit confused, on the issue of expanding D.C. waiver services to include people with a developmental but not an intellectual disability.  It also was disappointing that DDS director Nuss, in her response on that matter, was not very up to speed herself about the estimated number of people affected or the status of the updated needs assessment which DDS and the Developmental Disabilities Council are working on.  Luckily the DDC director, Mat McCullough, was able to shed some light on this topic in his testimony later in the day.

The video of the full day of hearings is at:

http://dc.granicus.com/MediaPlayer.php?view_id=2&clip_id=3118.  I testified on the panel that starts about an hour and 15 minutes into the video, which included very informative testimony by University Legal Services about DDA and RSA, as well as testimony about the self-advocacy group, Project Action!  Among other things, I discussed the emerging tension between person-centered thinking and the way in which community-based day programming is being implemented.  If this is a concern for you, I urge you to view and comment by March 21 on the pending D.C. state plan at http://www.dcregs.dc.gov/Gateway/NoticeHome.aspx?NoticeID=5857362.

Testimony by Laura Nuss begins about three hours into the video, and questioning of her and her two deputies – Andy Reese for RSA and Jared Morris, now formally named as deputy for DDA – about three and a half hours in.  If you can only watch part of the video, I strongly recommend that you watch this question and answer portion.  Incidentally, if you’re interacting this month with DDS, be aware that the agency is preparing to move toward the end of this month to a new location, at 250 E St SW.

Finally, this week WAMU-FM (88.5) is marking Developmental Disabilities Month with a four-part series, Tuesday-Friday at 6:50 and 8:50 AM, by Martin Austermuhle on “struggles of  D.C. residents with developmental disabilities.”  Also, Kojo Nnamdi will interview Tina Campanella of the D.C. Quality Trust on Thursday at noon.  These should be well worth hearing, and I hope you'll tune in.

Who's Watching Out?

Let’s face it – this is what we all want to know.  Whether your loved one is among the 700 or so people receiving services under civil commitment, or one of the great majority in D.C. who aren’t, we all want to know:  Who cares?  Who’s watching out?  Who’s keeping an eye on the service providers?  I believe persons with disabilities have the right not to have a judge deciding for them what services they need.  But I worry too, and I realize the less your loved one is able to communicate verbally his or her own needs, the more you worry about who is there – who will be there – to make sure DDS is doing what it should do.

These aren’t easy issues.  Families and friends across the country are grappling with this every single day.  My husband and I have no other relatives in the D.C. area, and we work constantly to build our son’s circle of support here so that there will be people around who care, who will be paying attention, when we no longer are here for him.  Here are the things that concern me most about DDS services, today, and what I’m trying to do about them so things go better in the future:

-          Turnover.  What we all want is for support personnel and decision makers to know, really know, the needs and preferences of the person we love who is in their care.    Fortunately D.C. requires providers to pay a living wage, but the “churning” of staff still sometimes seems endless. This is true in provider organizations, where it affects the quality of record keeping and how well DSPs know and understand our loved ones.  But it’s also true inside DDS:  our son has been receiving DDA services for only 1 ½ years, but already he has had three service coordinators.  (Refer to the page of acronyms over on the right to help you understand some of the abbreviations I'm using.)

-          Poor information flow.  A lot of work has been done, especially in the State Office of Disability Administration (SODA), to try to make more information available to the public, through briefings, the DDS website (www.dds.dc.gov), and in other ways, about new policies and directions in which DDS is heading.  But often the folks we deal with directly are the last to know:  they just don’t seem to get information systematically from the SODA, or from DDA management, about new initiatives or policy directives. Sometimes provider agency personnel know before service coordinators do.

-          Unclear systems.  It often seems the answer you get to a question changes depending on who you’re talking to.  In some ways this may be due to poor information sharing, but I notice it happens all the way up the chain to senior management.  Being a squeaky wheel can help get results in any system, but too often with respect to DDS it seems to BE the system.  Reliable, understandable regulations and procedures, with clear criteria for exceptions, would be a fairer approach.  I think things are moving in this direction, but often that movement seems far too slow. 

-          Lowest common denominator.  The only way I’ve been able to get the kind of day programming my son needs is to push and push, and make arrangements myself for classes and volunteer opportunities.  There’s an inertia in the system that discourages creativity in tailoring support to individual needs and interests.  What’s worrisome in this regard is that DDA is now pushing all providers of day programming to become more “community-based,” essentially requiring them to keep people offsite to the maximum extent possible.  People have different preferences and tolerances for going from library to rec center, rec center to McDonalds, and for some the obligation to be out in the community all day long is a source of great anxiety.  Unless it’s implemented in a smarter way, this “community-based” push is going to conflict more and more with another stated goal, person-centered programming, which should mean individualization and choice if it means anything.

-          Employment.  “Employment first” is a good slogan.  I even believe it’s a sincere goal.  But here again, DDS - both RSA and DDA - needs to show a lot more creativity.  Day programs need to help people identify their particular skill sets, help them address the challenges standing in the way of competitive employment, and bring them into contact with potential employers.   At the same time, RSA needs to get together with local businesses and come up with plans that make more diverse employment opportunities available.  Relying on the federal government, Project Search, and grocery stores is not a plan well suited to everyone. 

You’ll notice that my concerns aren’t mainly about health and welfare.  A lot of effort has gone into establishing monitoring systems in recent years.  DDS has beefed up its own monitoring and oversight of provider performance – in fact as I write this, provider certification reviews (PCRs) are taking place.  University Legal Services (ULS) has direct responsibility for investigating accusations of abuse or neglect.  The Quality Trust has been monitoring the quality of DDA and provider service delivery for many years, and with the impending closeout of the Evans case it is assuming oversight for those individuals as well.  The D.C. council, too, keeps watch over DDS operations, and will conduct hearings on DDS performance on March 10 (put it on your calendar!).

Still, it’s true that D.C.’s services for people with disabilities – as in most of the rest of the country - don’t operate in very creative or imaginative ways to help people make progress and realize their personal potential, unless there’s someone pushing hard from the outside to make them do so.   Keeping my own information records in order; making sure the service coordinator and agency personnel know about new initiatives and regulations; seeking out and arranging for concrete opportunities:  these are some of the things I do routinely.  And yes, I worry about who will do all this when I’m not around.  This is what makes me a woman in a hurry to see improvements, to help my son learn to advocate for himself, and to cultivate local friends and supporters who – with out-of-town family - will continue paying attention even when we no longer are here.  We all need circles of support, and these make the very best watchdogs.  

Curb Cuts!

This topic is a little outside my normal set of concerns, but during and since our “Snowzilla” storm it’s been on my mind.  Then this morning I heard a friend who gets around by motorized chair being interviewed on the radio, and I decided to do a short post about “snow mountains” at intersections.  The subject on the radio was about people who rely on wheels to negotiate the sidewalks, but the fact that street plows have been piling snow (now ice!) at intersections that residents often have already shoveled is an issue that affects everyone – wherever we are on the different-abilities spectrum.  As was pointed out, this has prevented many folks from even getting out of their house, but it also has regularly forced schoolkids, workers, retirees and other people, of all abilities, into the line of traffic.  We should never have another snowstorm in which street plows systematically block the route for those who need to use the sidewalk.  I hope Susie Cambria (http://susiecambria.blogspot.com/p/about-me.html) has written about this, or will.  I also hope the mayor (eom@dc.gov) next time will not only berate citizens for getting in the way of the plows, but also make sure plow drivers know to push the snow where if won’t consistently block citizens’ access to the sidewalk.  City council members  (www.dccouncil.us) please also pay attention!

Another problem “Snowzilla” caused was the cancellation of the January 29 council hearing on the “Citizens with Intellectual Disabilities Civil Rights Restoration Act of 2015,” which I wrote about in my last posting.  The best way to be sure you learn when the hearing is rescheduled is to watch the council website (see above) or to let Erin Leveton in the State Office of Disability Administration (erin.leveton@dc.gov) know you’d like to be notified.  Also, if you’re interested in testifying – in person or in writing – contact Malcolm Cameron (mcameron@dccouncil.us).  You may be tired of reading about this bill (although it’s important!), so you should know I’m also working on some posts that deal with more day-to-day concerns.  Keep watching this space, and I hope we all will soon have emerged safely from the snow and ice!

A New Year, A Chance for New Beginnings

It’s been a busy start to the New Year, which fortunately has brought some positive changes for our son’s care.  December was a real low point, but a personnel change at my son’s supported-living agency and more energetic efforts at DDS to coordinate his care are helping improve the situation, slowly but surely.

I’ve also been busy, as some of you already know, trying to get my viewpoint on “The Citizens with Intellectually Disabilities Civil Rights Restoration Act” (B21-0385) before a broader public.  I don’t share the negative views of Mr Connelly, the lawyer who wrote in the Post last month opposing the bill (https://www.washingtonpost.com/opinions/peril-for-intellectually-disabled-dc-residents/2015/12/23/6d0b1ebe-a8ed-11e5-8058-480b572b4aae_story.html), and I was happy the Post agreed to print my response today  (https://www.washingtonpost.com/opinions/the-district-should-move-away-from-court-ordered-services-for-those-with-intellectual-disabilities/2016/01/18/750d39bc-bbd5-11e5-85cd-5ad59bc19432_story.html).

So you know my position, but I do understand the concerns of the person who commented on my blog post “Overdue Change for the District” (November 15).  I don’t think it’s quite fair for the writer to say that s/he only learned about the bill from lawyers, since DDS disseminated information about a series of briefings back in October which I also broadcast in an email on October 29.  Still, the writer expresses a heartfelt worry that I know is shared by many people whose family members or other loved ones have been receiving services in D.C. for a long while.  I believe that the reforms and progress in DDS over the past few years have come more from solid leadership than from judges’ orders.  At the same time, I realize change is frightening, especially for people who experienced the poor quality of services that used to be delivered by the District’s disability agency.  The closure of Forest Haven didn’t magically produce a high quality of supports for people with intellectual disabilities, and some of you reading this feel it’s only the legal system that has held District officials to account. 

I listened hard to folks who expressed worries about the bill at Shaw library back in November and more recently I’ve talked with others struggling over whether to support or oppose this bill.   If you’re leaning against it, please remember this:  anybody who’s now getting services through civil commitment can keep those services.  This bill will only lift the system of civil commitment for those who don’t now receive services in that way and for those who become eligible in the future.  Already, the majority of D.C.’s intellectually disabled citizens get their services without any court involvement whatever.  Also, across the rest of the country the courts don’t routinely order community-based supports for people with intellectual disabilities, either.

Whether or not someone gets services through civil commitment, organizations such as the Quality Trust and University Legal Services will continue to play their central, and essential, monitoring and oversight role.  Active self-advocates in Project Action! will continue demanding better services and responsiveness from DDS.  Involved family members and friends like those who show up at the Supporting Families meetings will continue to stand up for those they care for – through guardianship, powers of attorney, or the new supported decision making agreement that also would be established under the bill.   There have been vast improvements in DDS itself over the past decade, but there are also better watchdogs. 

Watchdogs – advocates – don’t have to have law degrees.  I truly believe that D.C. has left the dark days behind and that we need to move forward now with confidence to establish a system that doesn’t require court involvement.  Please, if the current system is working well for your loved one, then keep it.  But I hope you won’t impose civil commitment on others by asking the council to oppose this bill.

Whatever your position on the bill is, though, I’ll see you at the hearing on January 27 at 11:00, room 412 of the Wilson Building.

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.