The Holiday Season

This holiday is a good one for our family.  When I think back to this time last year, I couldn’t have predicted that would be the case, and I feel very thankful.  This blog is a way of trying to give something back for our good fortune.  

Some of you reading this may not be doing as well.  You may be struggling to get the supports you need to live the life you want.  You may be a family member, friend or other unpaid support struggling to help someone you care about and growing more tired and frustrated by the day.  You may very well not have time to make it to all the meetings you hear about in this blog, and I only hope you’re able to get to a computer to see this.  Not everyone can.  

A very big goal for me over the coming year is to try to get more information out to folks who can’t come to meetings on weekdays because they’re at work, can’t get transportation, or are just overwhelmed.  Information affecting you needs to be more routinely and easily available, and I raise this every chance I get.  Programs and services, even when they’re out there, aren’t worth a thing if folks don’t know about them, and seeing the need for change isn’t worth a thing if you don’t have the time or information to make that change happen.  I’m only one voice, but if you don’t know anything else this holiday season, please know that I’m a voice for you.  Happy holidays to you all.

35 Years and Counting...

I mentioned in an earlier blog that the filing of the Evans lawsuit in 1976 led to political action as well.  The D.C. council passed D.C. law 2-137, “The Mentally Retarded Citizens Constitutional Rights and Dignity Act of 1978,” setting the framework and standards for the city’s treatment of individuals who had previously been living at Forest Haven.  This bill was critically important and ahead of its time in the late 1970s.  It said that people designated by the bill would have the same rights as other citizens of the District of Columbia, particularly the right to live in the community rather than in an institution, and due-process rights.  As we read about this bill now, though, we don’t have to get past the title to know that it no longer represents the cutting edge of thinking about people with disabilities.  In 2012 the “People First Respectful Language Modernization Amendment Act” altered the language of law 2-137 to refer to “persons with intellectual disabilities,” bringing the terminology used in the bill into the 21^st century.  Sadly, however, the essential provisions of the bill remain the same as when it was first passed, at the dawn of D.C. home rule. 

Incidentally, I’m not the first to notice this! As my son was entering his mid-teens and I was just barely beginning to examine the world of adult services he would enter five years later, a strong group of advocates had just succeeded in getting an entirely new bill introduced into the council.  That bill, the Developmental Disabilities Reform Act, or DDRA, was introduced in the council in 2009 and for a time it seemed to have tremendous momentum.  (The blog that was set up to track its progress can still be found, at http://dc-ddleg.blogspot.com.)  But as 2010 drew to a close, it died in committee.  Had it passed, this bill would have modernized a lot more than language, and now, four years later, two of its most important proposed reforms remain incomplete:

Commitment.  People who lived in Forest Haven were sent there by the court system through a process of commitment, and although law 2-137 focused on deinstitutionalization, it kept the courts involved.  Since the law has not been substantively revised, it is still the case that persons with moderate to severe intellectual disabilities are “committed” to receiving community services.  The impact of this is that a judge in the D.C. Superior Court actually orders the services that DDA must provide, rather than the person or their family members having the decision making power.  This was briefly discussed at the Supporting Families Community of Practice meeting on December 18 and the next steps in addressing this through legislation will be a major focus of the next scheduled CoP meeting in the spring. 

Limited reach.  Because 2-137 is so specific about who can receive services, only individuals with an intellectual disability (in general, IQ of under 70) can qualify to receive services.  Anyone with another type of developmental disability cannot qualify for DDA services.  The DDRA would have changed this, and the bill did not advance to the council floor in part because of the expected cost of reaching people with autism and other developmental disabilities who often do qualify for services in other jurisdictions but do not qualify here.  In the interests of fairness the system must change to be more inclusive, but budget considerations will be prominent in any council deliberations on a bill to do so, and council members will need to hear very clearly that this is a priority for the citizens of D.C.  That, my friends, means us.

No word as yet on Mayor-elect Bowser’s selection to head DDS.  Whoever it is, we must make sure these fundamental reforms are on their agenda, as well as on the agenda of Council member Jim Graham’s successor as chair of the Committee on Human Services.

The Mayor-elect Needs to Hear from You!

In my last post I wrote about the public forum on December 2 for Mayor-elect Bowser’s health and human services transition committee.  That forum was dominated by issues of homelessness, which was no surprise.  But this is still the committee – chaired by Laura Meyers and Louvenia Williams - that will be making recommendations to the mayor-elect with respect to disability concerns, as well.  There are crucial issues on the horizon – the need to bring the Evans lawsuit to a close, a goal that’s nearly within reach; the need to alter D.C.’s outmoded system of “commitment” for individuals with significant intellectual disabilities; and the need to broaden the system of waivers to cover not only persons with intellectual disabilities, but those with developmental disabilities as well.  If Laura Nuss, the current director of the Department on Disability Services, is replaced at this time, all these urgent goals will be dealt a serious setback.  Every one of you reading this has a stake in these essential reforms, and therefore you have a stake in keeping Laura in this position.

The mayor-elect and her transition team have a great many important decisions to make about filling key positions in the administration.  Just today she began making her first appointments, but as she herself has said, not all incumbents must go.  She needs to hear from us, and she needs to hear from us now, that Laura Nuss is one of the senior appointees she must keep on the job!  So put yourselves down in front of your computers, go to the mayor-elect’s transition website,  www.wearewashingtondc.com, hit “Contact us,” and tell the mayor-elect, as well as Ms. Meyers and Ms. Williams, that Laura Nuss needs to stay.  It’ll only take you a minute, but it’s an important minute.

Once we know Laura is being kept on, we can get back to focusing on the reform agenda.  And when the mayor-elect gets all these messages, she’ll also know there’s a constituency out here that cares about disability issues, and we’re going to speak up! 

All together now!  Just do it, folks!  

Heads Up! December 2nd

I’ve learned from Muriel Bowser’s transition team that they will hold a public forum December 2 on health and human services issues.  Homelessness is likely to dominate the session, but this is also THE opportunity for voices to be heard on questions affecting persons with disabilities.  I’ve just learned about this and am going to have difficulty getting there myself, though I’ll make it if I humanly can.  But it’s important for the mayor-elect to hear from us!  Please plan to attend if you’re able, and to be heard!  It will take place from 4:00 to 8:00 P.M. on Tuesday, December 2, at One Judiciary Square - 441 4^th St. NW – in Zoning Commission Hearing Room 2205.  Please do try to be there.

Comments on the HCBS Transition Plan

I attended the November 17 DDS presentation on its proposed transition plan in response to the recent rule on Home and Community Based Waiver (HCBS) Settings (see www.hcbsadvocacy.org) and proposed waiver amendments.  I’ve encouraged DDS (erin.leveton@dc.gov) to post the draft transition plan and the Power Points prominently on its website.  The November 17 presentation will be repeated on December 1 and if any of you are able to attend it would be well worth your time.  Please also submit your comments to dds.publiccomments@dc.gov by mid-December (I believe the deadline is 12/21), and see the comments that I have submitted below.  I know these are pretty technical, but there’s important stuff here that affects the services people get very directly.

Comments on Draft Transition Plan

The viability of the new HCBS rule itself will have to stand the test of time, and there is a question as to whether CMS assumptions about what can qualify as HCBS housing may curtail the right of persons with developmental disabilities to a full array of housing choices.  However, my comments here pertain only to D.C.’s proposed transition plan, not to the broader national rule.

Structural/budgetary issues vs. personal independence:

-          In the November 17 meeting, many valid points were raised with respect to the difficulties confronting individuals wishing to pursue their own activities without being obliged to “go with the group.” Notwithstanding the widespread emphasis on person-centered planning, structural and budgetary limitations do indeed create severe constraints on person-centered implementation in D.C. (as probably elsewhere) in situations of shared staffing.  Finding the right balance, and being transparent about the conflicting priorities, will be essential as the transition plan is reviewed for resubmission next August.  Related to this is the significant constraint on administration of medications while out in the community, an issue badly in need of revision in the name of advancing community integration.

Assessment tools:

-          The timing allowed for development of the provider and individual assessment tools (November/December 2014, not 2015 as indicated in PPt. on pages 16 and 17) is wholly inadequate.  No draft tools have been circulated as yet, even to the advisory group, and expecting development of the tool and completion of the training through the holiday season is unrealistic.

-          Submission of provider assessments to DDS by the end of January will be rushed and this expectation guarantees poor products.

-          As I pointed out in the meeting, if surveys of individuals receiving supports are conducted by DDS service coordinators the quality of the response will be highly affected by the variability in individual service coordinators’ ability to connect personally with those they serve.  If there is no alternative seen to use of service coordinators for this purpose, then DDS must allow enough time to train service coordinators who may not have the necessary skills, and the person surveyed must be given the option to invite a person of their choosing to assist in answering the assessment questions.  Only in this way will the assessment yield useful results.

-          In terms of timing, it is unfortunate that only responses by those individuals who happen to have ISP meetings during the first half of 2015 will be available to DDS before it prepares the revised transition plan in August of next year.  A different approach to the individual surveys than the one proposed might allow these to be done with all persons served during the first half of the year.

Other:

-          The draft transition plan makes reference (page 3) to an Employment Learning Community (ELC) for providers.  Since studies show that most viable employment opportunities for persons with disabilities are identified by family members or other informal supports, it is of the utmost importance for DDS to find a vehicle – possibly the Supporting Families Community of Practice – to help families and other identified unpaid supports understand how RSA, DDA and providers can assist them in a team approach to identifying work opportunities for their family members with disabilities.

Timing:

-          In the meeting we were told that there would be an extension of the deadline for public comment on the transition plan, probably until December 21.  Please ensure that the revised deadline date is widely disseminated to allow others to comment on the plan.

-          What is the new target date for resubmission of the transition plan and waiver amendments, once the 12/1 followup session has been held and the comment period has expired?

-          When will there be an opportunity for public comment on the D.C. statewide transition plan, targeted for completion by the end of March 2015?

Comments on Proposed Waiver Amendments

Revisions to the current waiver do not (are not intended to) address the longstanding issue of inadequate coverage for persons with developmental disabilities in the District.  A potential Individual and Family Services waiver is still at least a year away (January 2016 soonest according to information provided in the November 17 meeting), and broadening of services to cover people with autism or other DDs is unacceptably distant, four years after the Developmental Disabilities Reform Act died in the council. Further remarks are provided below within this broader context of inadequate waiver coverage for D.C. citizens with developmental disabilities.

Individualized Day Services:

-          Many of the proposed amendments to IDS are sound, in particular concerning 1:1  availability and enhanced orientation requirements.  As I mentioned in the meeting, there are many available information resources, some of which are mass mailings from DDC and DDS itself, that should be regularly shared with all IDS providers so that community navigators can target specific developmental opportunities (classes, activities, community integration) for those they serve. 

-          However, some of the proposed IDS amendments raise a red flag.  Reduction in the rate of remuneration, combined with elimination of the Associates degree requirement, risks eroding the quality of individuals attracted to serve as community navigators, and those already hired may leave their positions when they face a $2.65/hour pay cut. A sliding scale to reward those with higher educational or job experience could help address this problem. (It is unclear from the presentation what is meant by “incentivized rates” for IDS in transition plan.)

-          In recognition of individuals’ varied needs, it is important for persons receiving 1:2 IDS services not to be paired consistently with the same individual unless they so choose.  Varied social contacts are extremely important and should be facilitated.

-          Also, with respect to IDS hours, DDS changed its earlier stated plans to raise the level to 40 hours/week.  It would be helpful to understand the thinking behind this decision (what were the types of comments that caused the reconsideration?), and DDS should revisit the 30-hour cap after another year since IDS remains relatively new.

-          As Dr. Mills continues her assistance to DDS with respect to IDS services, feedback should be sought from those who have been receiving these services in their initial phase.

Behavior Support:

-          While the motivation to avoid a heavy-handed approach to behavior support planning is a good one, the tiered approach, particularly with respect to Tier 2 time limits on developing and reviewing the BSP, carries potentially significant risks.  Behaviors may be complex without being intensive enough to lead to a Tier 3 placement, and curtailing the amount of upfront time spent on getting these plans right could actually lead to poor plans and, conceivably, behavior escalation.  Limitations on time availability for BSP developers already creates a tendency toward “cookie cutter” BSPs, which need to be avoided at all costs.  Therefore, greater flexibility in the time limits suggested for Tier 2 is warranted before the waiver amendments are resubmitted.

Other proposed rate changes:

-          The requirement that supported employment providers also be RSA providers is very welcome and will hopefully help increase coordination between DDA and RSA in the employment arena.

-          Other proposed rate increases appear well justified, and make the significant reduction in remuneration for fitness counselors seem odd.  At a minimum, the extent of the reduction should be revisited to assess the potential effects on the availability of counselors to work with persons receiving DDS support.

Increase in number of people served under the waiver:

-          While raising the ceiling in the number of people served is most welcome, the 1742 limit only serves to illustrate how few individuals with developmental disabilities in D.C. are actually able to be reached with DDS services. 

-          It is incumbent on the incoming mayor to work with the council to ensure more widespread support to the population of D.C. citizens with developmental disabilities.  Those of us most affected need to advocate strongly with our new mayor and our other representatives to address this fundamental issue of fairness.

Get on the Train, Muriel!

Dear Mayor-Elect Bowser,

You’ve been elected now, and we’re looking forward to the new ideas and initiatives you’re planning for our city.  But we wish you’d had more to say during the campaign about those ideas and initiatives.  For example, you didn’t answer the questions I submitted on October 6 with respect to the support that D.C. citizens with developmental disabilities can expect from you as mayor.  Granted, I’m just a person with a blog, but there were plenty of folks out there eager to see your answers, and we didn’t see them before Election Day.  We’re hoping they’ll come now, and soon, so I’ll repeat them here for the benefit of your transition team:

-          What do you believe has been the District’s most significant accomplishment of the past five years to support adults with developmental disabilities?

-          What is your #1 priority once the Evans case has been closed?

-          As mayor, will you support reintroduction of the Developmental Disabilities Reform Act?  If so, why?  If not, why not?

-          Would you retain the current director of the Department on Disability Services if you are elected?  If not, what attributes would you look for in a new director?

-          As mayor, what specific work or educational initiatives would you promote for adults with developmental disabilities in the District?

-          Are there policies or practices in other jurisdictions with respect to adults with developmental disabilities that you would like to encourage in D.C.?

I’d like to say one thing about the fourth question.  I know you have a great many people to reward for their support during the campaign.  But the theme you’re putting out there is one of creating new opportunities for underserved citizens, and it’s important for that to extend to D.C. citizens with disabilities.  They need your firm and vocal support, and keeping Laura Nuss as DDS director can help ensure that they get it.  She walks the talk, and her dedication is clearly evident even to those who sometimes disagree with her.  Mayor Fenty knew what he was doing when he elevated her in 2010 to the director’s job, and she’s vastly increased the effectiveness of DDS while also bringing closure of the Evans lawsuit within reach.  She still has ideas and direction, and she can ensure that your administration reaches out with heart, determination and intelligence to your constituents with disabilities.

Let’s keep the train on track, Muriel.  Hang onto Laura.   

Raising our Voices

I received a comment on my October 6 post asking if there had been any responses from the candidates.  As of today, with many people having voted already and voting day itself just around the corner, none of the candidates have responded.  This unfortunately reflects the fact that issues affecting D.C. citizens with developmental disabilities just don’t seem important enough to them.  They don’t realize that we are a meaningful constituency, and they will not realize it until we become vocal.  Whoever becomes our new mayor, folks, let’s promise that a year from now s/he will know that our voice and vote count!  

On the Spectrum in DC: There’s Not (Yet) Much There

On October 18 I attended the annual luncheon of the D.C. chapter of the Autism Society of America.  DCASA has been in existence for 33 years, formed by a cluster of D.C. families who - far ahead of the curve at the time - banded together to create a community of support for their family members with autism:  www.autism-society.org/chapter130/.  I’m a latecomer and this was only my second year attending the DCASA luncheon.  (Thanks Tina and Ron!)  This year Laura Nuss was the featured speaker, and she specifically tailored her remarks to this group, addressing in particular the good work DCASA does in sponsoring Camp Claggett and calling attention to broad national trends and initiatives with respect to autism.  At the end of her speech she mentioned DDA’s interest in broadening the reach of disability services in D.C. in the future to reach people with autism who do not currently qualify for services.

This intersects with a point I’ve made in earlier blogs:  right now D.C.’s only Medicaid waiver for people with non-physical disabilities is based on a finding of IQ of 69 or below before the age of 18.  There is no autism or broader developmental disabilities waiver yet, and there can’t be until the D.C. council takes further action.  (Listen up: this will require advocacy!)  Until that happens, if you’re trying to get services for your family member, you’re playing by the current rules, and it’s important to realize that DDA’s intake and eligibility unit is in charge of making sure everyone who qualifies meets that standard (http://dds.dc.gov/node/727512).  From your first application submission for DDA services, you must make sure that you have the relevant documentation demonstrating your family member meets the requirements.  Even if you never wanted your family member to be labeled as intellectually disabled (ID), if you want DDA services, there’s no choice at this time.

It’s the Medicaid waiver, administered by DDS/DDA, that unlocks the broadest array of services.  However, if your family member has autism and does not have a diagnosis of intellectual disability that will qualify him or her for the current waiver, DDS/RSA (see my post from August 11 entitled “Structures and Services…”) has a limited set of programs under Project Search, a nationwide program specifically focused on helping young adults at the upper end of the autism spectrum get jobs (although all students receive training under Project Search, only a minority wind up being offered jobs).  There are two categories of Project Search programs:

• One, in partnership with DCPS, is for young people who are still in school.  Only students who are working toward a certificate of completion (as opposed to a high school diploma) can qualify, and when they sign up they have to agree that the first year of Project Search will be their last year of school:  http://dds.dc.gov/page/project-search. 

• More recently, RSA has piggybacked on a couple of Montgomery County Project Search programs for those who already have left school, sponsored by the Ivymount School in partnership with SEEC (http://www.seeconline.org/project-search).  These involve training and job locations at the Smithsonian Institution and the National Institutes of Health (NIH), but the program is highly competitive.  Until recently there was another, D.C.-specific program at George Washington University, but they closed it down in May and haven’t yet announced whether or when it will start up again.

Beyond this, there are no ongoing structured programs in D.C. for people with autism who need supports.  What you will find are random program,s, activities and such around the area.  A couple of specific organizations to be aware of – again, mainly for higher-functioning individuals – are the Autism Self-Advocacy Network (http://autisticadvocacy.org/), which offers nationally competitive internships in the D.C. area; a Yahoo group, Asperger Adults of Greater Washington (https://groups.yahoo.com/neo/groups/dcaspie/info), a support/social group which meets monthly downtown; and a Meetup group called Adult Autism Spectrum Friends (http://www.meetup.com/adultautismspectrumfriends/) for folks along the whole spectrum.  (I don’t have personal experience with either of the social groups.) Mat McCullough, executive director of D.C.’s Developmental Disabilities Council - Mathew.McCullough@dc.gov - sends out information about various other activities and programs around the area for persons with autism and other developmental disabilities, including the DDC’s own D.C. Advocacy Partners (DCAP) course.  

However, none of these provide supports and services on an ongoing basis to anyone with autism or any other developmental disability unless they first meet the ID standard.  The Individual and Family Supports waiver, now under development in DDA, will be much better than nothing for families who currently are going it alone, but the real answer is going to be action in the D.C. council to allow those with autism and other non-ID developmental disabilities to qualify for more extensive services.

Questions for the candidates

I've just submitted the following to the mayoral candidates:

I was formerly an executive in the federal government and am the parent of a young person with a developmental disability in the District.  Among my current advocacy efforts is a blog, DDinWDC.blogspot.com, which addresses issues affecting D.C. citizens with developmental disabilities and encourages others to get involved in opportunities for reform.  I am not a journalist and this is an entirely volunteer effort on my part.  Your campaign’s answers to the questions below will be posted on my blog before the November 4 election:

-          What do you believe has been the District’s most significant accomplishment of the past five years to support adults with developmental disabilities?

-          What is your #1 priority once the Evans case has been closed?

-          As mayor, would you support reintroduction of the Developmental Disabilities Reform Act?  If so, why?  If not, why not?

-          Would you retain the current director of the Department on Disability Services if you are elected?  If not, what attributes would you look for in a new director?

-          As mayor, what specific work or educational initiatives would you promote for adults with developmental disabilities in the District?

-          Are there policies or practices in other jurisdictions with respect to adults with developmental disabilities that you would like to encourage in D.C.?

Thank you.

Carol A. Grigsby

www.DDinWDC.blogspot.com

Where We've Come From

In this post I’d like to start filling in some of the history of the system for people with developmental disabilities that we have in the District today.  There’s been a lot of legal involvement in this area, and I’m not a lawyer, so I’m going to keep as much as I can to the essentials. 

Forest Haven is really where it started.  This was an institution opened in the 1920s in Laurel, Maryland, to house (some would say warehouse) District residents with intellectual and developmental disabilities.  Like many of the large institutions of its type and era it did a poor job, but for a half century it was allowed to continue in existence without getting much public attention.  Then in 1976 Harold and Betty Evans, on behalf of their daughter Joy who resided there, brought suit against the city over the deplorable conditions, and this led, in 1978, to the first of many “consent decrees,” or legal understandings between the court and the District government, concerning changes needed in the way the District was treating people at Forest Haven.  The idea was gradually to move people out into better living situations while at the same time improving conditions at Forest Haven.  At the same time, this flurry of attention to Forest Haven and the Evans case also led to political action in 1978, in the form of a law passed by the relatively new (after enactment of home rule in 1974) D.C. council, which, with only minor amendments, remains the law still on the books as the basis for provision of services in D.C.

After all these years, the Evans case continues to dominate the way in which services are provided in the District.  A whole series of further consent decrees have been issued since 1978, including one in 1991 that closed Forest Haven once and for all and moved out the last group of people still living there, and the most recent one in 2006 that established the Department on Disability Services.  Huge amounts of legal ink and major efforts by D.C. disability advocates have brought us to the present day, when the District appears close – within a few months most likely – of meeting the final requirements under Evans and being out from under court oversight.  Although there have been system improvements and also significant efforts to update the District’s 1978 legislation - most notably the gargantuan but ultimately unsuccessful effort to obtain passage of the Developmental Disabilities Reform Act in 2010 - it’s truly the conclusion of the Evans case which will open the door to the possibility of real reform of the D.C. system.

So we’re very near a crossroads, in terms of the opportunity created by the closeout of the Evans case, to launch a new chapter in the way the District delivers services to its citizens with developmental disabilities.   That doesn’t mean it’s an easy road ahead though – far from it.  In some of my future blogs I’ll talk a bit more about the ways in which the history complicates the way forward, as well as other hurdles that will need to be overcome. 

Getting Rolling on Advocacy

Getting Rolling on Advocacy

This post will be brief, and is mainly to alert folks that the DDS-sponsored Supporting Families Community of Practice is beginning to be a more active and promising forum (erin.leveton@dc.gov for information).  I attended much of the session on September 17, at which the main focus was on getting parents to organize on disability issues and to advocate with local authorities on shared concerns.  Laura Nuss, Director of DDS (see my August 11 post) was there, and she spoke about possibilities for advocacy around future legislation with respect to support for people with developmental disabilities, such as alternatives to the current court-commitment process for most D.C. Medicaid waiver recipients and funding an expansion of coverage beyond those with intellectual disabilities.  There was also a very good presentation on advocating for system change in D.C. by Diane Lewis of Alta Consulting.   Based on the turnout and the substantive focus of this session, it’s clear that things are starting to bubble and there are people ready to get more active, but efforts need to be focused in order to make a difference.  With the number of people in D.C. who are not being served currently, for reasons having to do with the history of service provision in D.C. (more about this in upcoming posts), I believe this deserves a major push from all of us, with our council members as well as the new mayor, so that a broader array of people with developmental disabilities and their families get the support they need. 

I’m developing questions to send to the three mayoral candidates with respect to their perspectives on issues of developmental disability in D.C.  If you have thoughts you believe should be reflected in the questions I submit, feel free to weigh in – click below on “No comments,” and make it one, two, three and more comments.   I’m proceeding, but will welcome your ideas.

And while you’re at it, make sure you go to the bottom of the blog and select “Follow by email,” so you can see future posts with less effort. 

It's Far from Person-Centered Yet

From my last entry you might think I’m very mellow about how the D.C. system is progressing.  But having the right long-term goal doesn’t mean that all is well in the here and now.  This still is a system that is falling well short of making person-centered planning, much less person-centered implementation, real.  Much of the time the service coordinators and provider staff are chugging along, holding the meetings they need to hold, doing the paperwork they need to do, making sure procedures are followed as their organizations demand.  Getting the different actors to come together and coordinate around the needs of a particular individual is a different kind of challenge, and too often secondary.

When our son first began receiving services in June, there were many meetings that had to take place in a short time.  This was even more true given that his annual Individual Support Plan (ISP) was due for revision in early July.  DDA and providers whipped into action, scheduling meetings at the times most convenient for them, then “inviting” our son and us with little or no lead time.  I pulled myself out of my sick bed, and my husband reorganized his work day, in order to accommodate their timing.  Worse, they had no understanding yet of our son’s anxieties about meetings, and we had to watch him grow increasingly overwhelmed as people peppered him with questions and talked over one another.  In one particularly challenging meeting he left the meeting with an aide and took hours to calm back down.

What left us even more amazed was that in the planning process, he was treated as though he was born the day he began receiving DDA services.  Everything we know about our son’s first 21 years, all the information shared by the school he was attending until mid-June, were set aside while the first impressions of staff during his ten days with them were taken at face value.  This institutional arrogance, even if unintentional, was infuriating and did not serve him well.  We had to be assertive, and more, in order to get anyone to pay attention to what made him tick as a person rather than making instant assumptions based on little information.

It’s also taken tremendous effort to get his two providers to work well together.  Early days were full of arguments over logistical issues such as meeting points and times for his “handoff” between supported-living and day services.  And establishing any time, ever, for him to be with family rather than providers during a weekday for medical or other appointments has necessitated endless negotiation, while last-minute cancellations of his day services have occurred with annoying frequency.   And heaven forbid that both providers should use the same calendar to avoid scheduling conflicts.

The “bubble” within which DDA and its service providers operate is so self-contained that they scarcely realize anyone exists outside its boundaries.  We’re still struggling to get his supported-living provider to realize  that our son’s doctors might not be immediately available at whatever time they choose to telephone or want to call a meeting – or to get anyone to imagine that his father or I might have a competing work or other priority that prevents our immediately jumping when they say jump.  Somewhere behind the scenes is probably a demand from DDA of which we’re not fully aware, but this only serves to prove that the requirements are rolling out from DDA rather than keeping our son at the center.  We also still wonder, given the limited pool of 2000 or so people that DDA supports, how he will be able to maintain contact with his few social contacts outside that very restricted pool, make new friends, or someday live with someone who isn’t also living inside this bubble. 

Even realizing that our son is doing remarkably well within today’s constraints, these are tremendous hurdles that loom in the future for people with disabilities in D.C. and elsewhere.

Let's Talk about the Good News

This is big:  our son is doing well.  He likes his living situation and the staff who support him.  Since he only got out of school and started receiving support from DDA two months ago, that’s worth celebrating.

The organization that supports him in his apartment is new to D.C., though well established elsewhere, and he was the first person here for whom they began providing in-home services. Initially they were putting their local organization in place while starting to provide his services, and that made things bumpy at first.  It also came as a shock – after my husband and I had been so involved in arranging for him to receive services, selecting providers, and finding the right living situation for him – to find that our input was initially not expected nor, in a way, desired.  The system doesn’t really yet have a way to comfortably accommodate the involvement of family members or other unpaid individuals on whom the person relies, even in a situation such as ours in which our son had signed Powers of Attorney inviting our help with medical, financial and related decisions.  It’s taking time to work this out, and there have been some growing pains for sure, but there’s been progress on this front and overall his provider has proven flexible and well-intentioned in trying to make things more inclusive.  With plenty of goodwill on both sides, things have smoothed out considerably over the past two months. 

We believe our son has actually benefited from having a provider organization that, being new to D.C., isn’t so set in its ways.  And they’re only here thanks to the fact that Laura Nuss (see my last blog post) has actively sought to inject new blood into D.C.’s disability services environment.  She’s courted good providers from other jurisdictions and convinced some to set up operations here.  This is quite an accomplishment, since D.C. until recently hasn’t had a reputation as an easy place in which to provide services for people with disabilities.  It’s because of her determined efforts, and those of her predecessor Judy Heumann, that things are turning around and folks are beginning to take notice. 

Our son is also benefiting from a new type of daytime program, Individualized Day Supports, or IDS.  Unlike standard work or day habilitation programs, IDS allows for more variety, tailored to a person’s skills and interests.  It was originally conceived with older people in mind, since many of those whom DDA serves are aging and more in retirement mode; but it’s also well suited to young people like our son who haven’t really thought through what they want to do and need more time to sort things out.   With IDS, the provider develops a Community Integration Plan based on the person’s interests, and a community navigator accompanies him/her to activities geared toward accomplishing those goals.  For IDS our son’s provider is a longtime D.C. organization that sees IDS as an opportunity to try some new strategies with the people they support.  We’ve worked closely with them to ensure his schedule offers some challenge and room for growth, so he’s been taking some classes as part of his day activities.

These new providers and new programs are some of the good news for everyone in D.C. just now.  There’s a lot of progress to be made, but also a determination as long as Laura is in the job to maintain forward momentum toward a more “person-centered” system of service provision.  We’ve encountered many challenges up to now in our dealings with the Developmental Disabilities Administration, and we expect many more, but most of the problems are those of a bureaucracy that’s trying to catch up with change.  This is much better than dealing with an organization that’s trying to block you at every turn.  So when I’ve encountered roadblocks, I’ve advocated as forcefully as I must, but gritted my teeth and forged ahead in the knowledge that DDA leadership is focused on a goal that I fundamentally share. 

Structures and Services for Supporting Persons with Developmental Disabilities in D.C.

Although D.C. is not a state (as we know), for the purposes of what I’m discussing here the District has the same structures and responsibilities that states do, although it only recently has begun to develop “state” structures to provide oversight of city programs and actions in this area.

In D.C., the entity with primary responsibility in this arena is the Department on Disability Services ( http://dds.dc.gov ), headed by Laura Nuss (laura.nuss@dc.gov).  DDS’ primary responsibilities pertain to persons whose disabilities are cognitive, intellectual, and/or developmental rather than physical.  In D.C. both the Developmental Disabilities Administration (DDA) and the Rehabilitation Services Administration (RSA, which also serves people with physical disabilities) both come under DDS and are overseen by two deputies reporting to her, although one of these positions is currently vacant.

Rehabilitation Services Administration

http://dds.dc.gov/service/vocational-rehabilitation-services-rsa

Every state has a department that deals with “vocational rehabilitation,” or VR.  This is an oddly named service but essentially is concerned with helping people with disabilities identify the type of work they’d like to do and then assisting them to get a job or to get the training or education they need.  In D.C. this department is called the Rehabilitation Services Administration, or RSA, currently headed by deputy director Andy Reese (andrew.reese@dc.gov ).  (In Maryland the VR department is known as the Division of Rehabilitation Services, or DORS, so as you see the names can differ a lot.)  Qualifying to receive services from RSA is comparatively easy, there isn’t a high bar for qualifying.  However, once an individual has qualified, RSA is mainly focused on short-term support.  If, for example, the person loses a job into which RSA has helped place him/her, then the process starts over.  RSA has also funded some individuals to attend out-of-state vocational programs and colleges, but is doing less of this and is trying to develop more local programming instead.   RSA also is trying to develop programs such as Project Search (www.projectsearch.us ), which can help bridge the gap between school (IDEA-funded) and adulthood, an area in which D.C. has not been very strong in the past.

Developmental Disabilities Administration
http://dds.dc.gov/service/services-people-idd

The much more meaningful long-term supports for persons with disabilities are provided in all jurisdictions through a system of “Medicaid waivers,” which in essence allows federal Medicaid monies to be used for groups of people who would not normally be eligible.  (In a future post I’ll explain something about deinstitutionalization and the move toward “Home and Community Based Waivers.”)  Some jurisdictions have a fairly extensive network of Medicaid waivers for different categories of persons with disabilities, but this is not yet the case in D.C.  Here, the Medicaid waiver program for persons with developmental disabilities is administered by DDS’s Developmental Disabilities Administration, or DDA, headed until recently by deputy director Cathy Anderson (position now vacant, so Laura Nuss is the contact point).  The only waiver available for persons with developmental (i.e. non-physical) disabilities in D.C. is focused on intellectual disability (http://dds.dc.gov/service/services-people-idd). 

With few exceptions, to qualify for this waiver it is necessary for the person to have been tested with an IQ of 69 or below before the age of 18.  Many families are unaware of this and begin trying to get services after their family member is 19 or older without having obtained such testing.  This can make it extremely difficult, if not impossible, to qualify for services.  Conditions such as autism, without this IQ qualification, are not sufficient to qualify:  D.C. does not yet have an autism waiver as do Pennsylvania, Maryland, and quite a few other states.  DDA is working to develop a new waiver that will provide flexible supports to individuals with a broader set of disabilities, but it has not yet come into effect and will only be helpful to individuals who have fewer support needs and are generally still living with their families.

For the so-called I/DD waiver described above, therefore, the primary hurdle is qualifying.  Once a person has been found eligible for services, there is no waiting list.  This differs significantly from most states, where there may be a broader set of available waivers and qualifying may not be too difficult, but the person needing services then may remain on a waiting list for years waiting to receive them.  D.C. has begun developing criteria for a potential waiting list, but at this point it has not put them into effect.

The above is just a primer, there’s more to say in future blogs.

Why I've Started this Blog

I finally did it.  I helped my son successfully make the transition from attending high school to receiving adult disability services under the Medicaid waiver system.  I did this in the District of Columbia, where I have lived for over thirty years.  Most of what I will write in this blog will be most helpful to other families in D.C., but a lot of it will also help folks in other jurisdictions:  a lot of the fundamentals are the same but the details can differ in important ways. (See my next post on D.C. supports to persons with developmental disabilities.)

I did a tremendous amount of research in the years leading up to my son’s transition out of the school system.  I was frustrated by the fact that too many information sessions in the D.C. area actually focused on the national scene or on criteria, structures and providers in suburban Maryland and Virginia, which helped only up to a point.  I needed to know about the specifics in D.C., so I networked a great deal and learned about other families’ experiences.  Some have already been receiving occasional emails from me on important policy issues or meetings offering the opportunity for the public to weigh in.  Even earlier, some of you joined my (now dormant) Yahoo Group, “DD in DC.” (I would have used this name for my blog but Google wouldn’t let me.) 

There’s a much larger army of people struggling to build a good life for children, siblings or other family members with disabilities in this city.  You’re the folks I want to reach. 

I also know I’m one of the lucky ones, because I was able to dedicate nearly full-time effort to getting my son through his last years of school while building the framework for his future as an adult with a disability.  Three years ago, in mid-2011, I was still working for the federal government, and my son had just turned 18.  Up to then I had planned to continue working until the day he left school and to retire at more or less the same time he graduated, but I was beginning to realize that might not be a good plan after all.  It was becoming clear how much there was to do in order to get him the services he needed, and I could see my husband and I wouldn’t be able to put all the building blocks in place if we both were busy in full-time jobs.  So I took my 31 years and my pension – I said I was lucky – and began my voyage as an advocate for both my son and for others in similar situations. 

It’s been agony.  I know it’s even more agonizing, though, for families that aren’t in a position to dedicate the time and effort I have, so I’m launching this blog in hopes that some of what I’ve learned along the way – and some of the experiences our family will no doubt continue to have – will be helpful to others.  Some of you reading this will know our family circumstances, maybe even know my son.  But my purpose here is to shed light on the process you’ll confront, not to get into a lot of his personal specifics, and I ask you likewise not to undermine my son’s privacy in your public comments.  I hope to help you gain the confidence to advocate for your family member and help him/her to become an effective self-advocate, while also enabling you to understand how the system works now in D.C. and consider ways in which it can be improved with greater public input and involvement. 

My aim is to post new content every two weeks or so, and I welcome comments on my blogs.  It will be helpful to all of us to learn about others’ experiences and perspectives on seeking services in D.C.  Although I’m very well informed, I’m not holding my views up as authoritative, and if I’ve gotten something wrong, I’s important for me and others to know it.  So feel free to weigh in, but in a spirit of information sharing and brainstorming about ways in which we might be able to help move the system forward, here and elsewhere in the country.  A lot of good is being done in D.C., and there’s been great progress over the past few years.  But it’s only through individuals making their views and needs known that further progress will take place. 

The road is very long (never ending, in fact) but it helps to have companions along the way.    

Carol