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