Friday, December 28, 2018

Housing Changes That Could Change Your Life: Part Two

Part two of this blog post will address the HCBS Housing Choices” draft policy and procedures, which, unlike the Contribution to Costs policy, are wide open for comment and revision. (Refer to for the set of proposed housing policies and procedures.)  The Housing Choices policy and procedures lay out what is supposed to happen in the future if people receiving residential supports want to live with people other than DDS-designated roommates or in a rental unit that exceeds the rent cap established by DDS.  To an extent the choices offered in this policy already exist, but entail individual negotiation with DDS. This policy would standardize the options available to people and – most importantly - shift the risks of these arrangements onto the people receiving supports.  As the procedures (2.C.3.) state, “the person…accepts the associated risks, including financial risks and facing eviction for non-payment of rent.”

This is a real departure from past practice, and it’s why a great deal of caution and deep thought are needed.  Since there is no real time urgency for implementing this policy, DDS should take the time needed to responsibly think through the implications along with stakeholders.  The next opportunity for discussion will be Monday, January 7 at 2:00  in the Joy Evans conference room at DDS headquarters and at Project Action’s January meeting.

Let’s look first at who this applies to - only those receiving residential supports (supported living or residential habilitation) services under the DDS-administered I/DD Medicaid waiver.  A lot of people in the Supporting Families meeting on the 13th were confused about this. To be clear, the policy applies only to those receiving intensive supports in a home owned or leased by a residential-services agency or the person being supported.  (Some of the proposed changes are make things more confusing, though, as discussed below.)

Now let’s look at why this is happening:  D.C. rents are rising astronomically, and people are getting priced out of the local housing market.  Some folks who have been living for a long while in a particular building have been forced to move because their rents have risen above the DDS rent limit.  So more and more people are having to move where rents are less expensive, mostly out of the city and into Prince George’s County.  (I discussed this in my post, “D.C. Housing News You Can Use,“ on August 9.)  People just starting to get supports are also being moved out of the city.   So those who can do so are looking at other options if they want to stay in familiar neighborhoods and not lose their ties to D.C. and their community (including voting in the District, which our citizens with disabilities have been encouraged to do).

Finally, let’s look at some of the details, and where – based often on direct personal experience - I see bumps along the road if DDS moves to implement the Housing Choices policy and procedures without further thought and discussion:

-          In the policy (3.D. under “Standards”), DDS assumes that a person “has the option to choose to become either a sole lessee or a lessee with one or more consenting third party co-signers.”  Unfortunately, this option does not necessarily exist.  If a person has no credit record – which is the case for many people with disabilities who have not held paid work - then some (maybe most) landlords will not allow the person to be a lessee – not even a co-lessee.  They will only allow someone else – usually parents or other family members - to be the lessee, with the person being listed on the lease as the resident in exactly the same way they are when a provider agency does the leasing.  DDS will quickly need to decide whether an apartment rented by a parent for a person getting supports then becomes a “natural home” and whether, if it does, the person can still qualify for the “housing choices” being offered.  The existing standard for who can own or rent a supported-living residence – section 1934.7 in - suggests an inconsistency here that needs to be addressed.

-          The Housing Choices policy (Standards, 3.E.) further calls for DDS to pay the residential provider an amount up to its rent limit.  Currently, when family or others pay above the rent cap, the provider combines both payments and the landlord receives a single payment. Under the proposed approach, it appears there would be two payments to the landlord, one from the provider (the DDS payment), and another from the person or their family for the balance. If this is the intent, then does DDS know that all landlords would accept such an arrangement, and how would the lessee be sure the accompanying DDS payment would occur on time (see below in the discussion of risks)?

-          The policy assumes that all risks can be shifted onto the lessee, but in at least one regard this is not the case.  Landlords often require renter’s insurance, but - based on my direct personal experience - an insurance company will not cover liability for staff who work in the apartment under such a renter’s policy – they will only cover the lessee and named resident. This means that the provider agency still will bear the risks for the actions of its own staff and will need to carry applicable liability insurance.

The above considerations apply to landlords’ and insurance companies’ requirements, but as it moves to shift the risks of housing arrangements onto the people it supports, DDS must mitigate risks over which it has control, for example:

-          DDS is not always timely in its payments to provider agencies, and some providers are also late in their own payments. If the person or their family is on the lease, and the DDS/provider portion of the rent is paid late, that will affect the credit rating of the person or family member on the lease, and if paid very late or not paid at all, could cause a person to be evicted.  There need to be ironclad assurances by DDS and provider agencies that payments will be made to landlords by the 5th of the month so that delays on their part will not negatively affect others’ credit ratings.

-          The new procedures (“The Process for Making Housing Choice,” 3.E.6.) lay out an approval process by DDS for any proposed living situation before the lease can be signed.  Landlords may be willing to hold an apartment while this process takes place if a DDS provider agency is the one who’s renting, but it isn’t clear that a landlord will hold an apartment for a person or family if the DDS approval process takes a while, so DDS should commit to getting this done within a specified period.

-          Section 3.H. (under “Standards”) of the policy addresses what happens in case a person opting for a nontraditional housing choice is evicted, and goes on to describe a process for either placing the person into an existing vacancy in provider housing or, after further discussion, allowing them to choose another nontraditional living situation.  An eviction can happen quickly, and the process described takes time.  DDS should plan to have a clearly defined respite space for people in these circumstances, to ensure they do not wind up on the street in the meantime.

I know I haven’t thought of everything.  Other unforeseen issues will arise, along with financial consequences such as those I discussed on part one of this blog post.  This calls for DDS to have a core of dedicated troubleshooting staff who can step in quickly to assist when the requirements of landlords and insurance companies don’t align with DDS expectations and are beyond the capabilities of service coordinators to resolve.  Housing decisions must often take place quickly, and lengthy delays will only ensure that desirable apartments go to someone else while details are worked out. 

The procedures also state (section 1.) that “DDS will post information on its website about DDA residential supports and rental limitation rates.”  DDS also needs to post a clear discussion of likely risks and what it intends to do to mitigate risks over which it has control, as discussed above.  Many issues can be foreseen, and I’ve called attention above to a number of them.  DDS needs to try to sort these out before moving forward so that all the learning doesn’t take place at the expense of people and their families.

Housing Changes That Could Change Your Life: Part One

This is part one of my last blog post of 2018.  Read both parts one and two quickly, because decisions are being made in the early days of 2019 by the D.C, Department on Disability Services (DDS) about new policies and procedures affecting anyone who gets residential supports from DDS. 

At the December 13 Supporting Families Community of Practice meeting, the revised policies and draft procedures to accompany them (,
were distributed and discussed in small groups.  These are complicated documents, and I’m happy to learn that, contrary to its original plans, DDS is extending the period for feedback at least to mid-January.  Both will be reviewed again at HCBS waiver meetings in early January, and at the Project Action! meeting in January.

There’s little that can be done with respect to the Contribution to Costs policy and procedures, since the D.C. council already passed its law and since the regulations have been finalized.  This set of documents will, however, be discussed on Wednesday, January 2 at 2:00 in the Joy Evans conference room at DDS headquarters.  As I’ve said before, I don’t believe there was sufficient effort to make stakeholders aware when the law was submitted and the regulations were out for comment last year.  However, at this point any fundamental changes are going to require further action by the D.C. council. In the near term, as DDS moves to implement this policy, I see two significant considerations: 

1)      Implementing the contribution to costs policy and procedures is going to involve some very large changes in practice, both at intake and in annual ISP (Individual Support Plan) meetings.  Many service coordinators are struggling to accomplish their core functions and will need solid backup to deal with these new complexities, so DDS needs to make sure it develops a team of dedicated staff who will fully understand all the financial implications and calculations.  We were told on December 13 that people will receive a detailed accounting of the locally-funded costs of their care, and this will be a complex undertaking.  In the longer term, there are surely going to be other unforeseen consequences from the contribution to costs policy for this unit to consider.  (I also would like to know what DDS has in store with respect to the language in the policy under 2.A., “or their estates,” which is not addressed in the procedures.)

2)      Some foreseeable financial implications will result from changes that would come under the accompanying “HCBS Housing Choices” policy and procedures, which I’ll discuss in part two of this blog post.  People’s SSI payments don’t only decline as a result of work income.  It’s also the case that if family or others help people with their housing costs over and above what DDS pays, their SSI payments will go down in that case as well.  People still will get their $100 allowance, but DDS will receive less.

An urgent change that I hope the council will make immediately is to ensure that cost-of-living increases will apply to the allowances received by the people DDS supports.  A fixed $100 allowance year in year out will have the effect of progressively impoverishing D.C. citizens with disabilities as the cost of living increases, while DDS gets the benefit of the annual increases in SSI or other benefits (making the name "Independence Square" in the accompanying photo of DDS headquarters especially ironic.) This is a flawed arrangement, not fair or justifiable, and I look forward to a change by the council very soon to remedy this, preferably by calculating contributions to costs on a percentage, rather than fixed-amount, basis.  

Part two of this blog will deal with the HCBS Housing Choices policy and procedures – please read on if you or those you support receive residential supports under the DC waiver.

Wednesday, December 12, 2018

DDS Housing Policies on the Agenda December 13!

As I mentioned in my last post, tomorrow will be the Supporting Families Community of Practice meeting, where the DDS policies on residential supports and contribution to costs of care from people receiving them will be discussed and input will be invited.  Here is the agenda:

Attend or call in if you possibly can - DDS needs to hear from you!

Sunday, November 18, 2018

Getting the Word Out on DDS Policies


I’ve been quieter than usual lately because my family has been going through challenging times with D.C.’s Department on Disability Services.  I’ve written in general terms about this, but we are in the midst of things so I prefer not to be more specific at this time.  I haven’t hung up my spurs, though.  I mean to continue keeping people informed, and hopefully motivating you to greater advocacy on behalf of yourself, your family or your friends.

In that vein, I want to update you on the policies I mentioned in my last blog post (“For Your Own Sake…Give DDS Your Input!” 11/5/18).  Both policies received attention in two separate meetings on Thursday 11/15.  One was the Family Support Council’s public meeting (the FSC, on which I now serve, holds a public meeting every other month), where the policies were discussed in some detail.  The other was the Developmental Disabilities Council, where Liz Seaton ( touched on them in the DDS update.  I’m happy to see that DDS is now working to spread the word and collect broad input on both these policies, which are of huge importance to people receiving residential supports under the I/DD waiver (see my Acronyms and Organizations list if you’re confused).  Unfortunately, what we learned in the FSC meeting that I did not know when I wrote last time is that what’s in the contribution to costs policy is pretty much dictated by D.C. regulations that are about to be published following a public comment period last year.   Here are those regulations, linked to my Google Drive:

In the FSC meeting, a number of us were dismayed that there had not been a more concerted and systematic effort to make concerned stakeholders aware of the opportunity last year for public comment on these regulations (which, it should be noted, are based on a law passed in the D.C. council in October 2016).  Although DDS has put a lot of effort into outreach in recent years and many different meetings take place – FSC public meetings, Supporting Families Community of Practice (SF CoP), Monday afternoon waiver meetings, DD Council, and others – the challenge now is that, even for very active advocates such as myself, it’s still easy to miss out on critical information such as the public comment period for such a critical set of regulations.   For overwhelmed families and people working full-time, there’s just no way to keep track because there are too many different meetings and it’s catch-as-catch-can whether you’ll pick up on important issues like this at any particular one of them.  Part of the answer, in this case, would probably have been a DDS meeting dedicated specifically to this issue, as has been done in the past.  From what Liz said on Thursday, even though it’s too late for comment on the regulations, DDS may indeed hold such a focused meeting soon on the two policies.  In the meantime, if you can make it to the next SF CoP meeting, it’s scheduled for Thursday, December 13th, 9:30 to 3:30, at Georgetown’s University Center for Excellence in Developmental Disabilities Center for Child and Human Development, located at 3300 Whitehaven Street, NW Suite 3300 (north of Georgetown, just off Wisconsin Avenue NW), and there will be another opportunity to hear about these policies then.  I don’t yet know at what point in the day’s agenda this will come (it’s a long day), but I will do my best to get the word out.

I’ve communicated views on these policies to DDS, but to a very large extent, I’m more concerned about the procedures which are supposed to spell out how the policies will be implemented.  There are many details DDS often doesn’t think through when it rolls out well-intentioned policies, and I believe they need to understand better the realities confronted by people and families who are directly affected.  (Public meetings may not always be the best way to get input on sensitive subjects.)  Although this will sound self-serving, it’s odd to me that it’s been so long since anyone at DDS read my blog and called to ask what I meant by something I wrote or how they might try to address a particular issue I’ve raised - even though my posts reflect not only my personal experience, but the experiences of others who communicate their concerns to me.

In a related development, congratulations are in order to Erin Leveton ( on her elevation to the position of deputy director for Quality Assurance and Performance Management at DDS.  She replaces Jared Morris, who remains as chief of staff.  Although I’ve appreciated having SOPPI as a freestanding state-level office, but this may make it more likely that DDS policies will be understood and implemented at the operational level.

Monday, November 5, 2018

For Your Own Sake...Give DDS Your Input!

The Department on Disability Services is in the process of revising the way in which it develops and presents policies for both the Developmental Disabilities Administration (DDA) and Rehabilitation Services Administration (RSA).  The new approach was rolled out last month at the standing Monday-afternoon meetings attended mostly by representatives of provider agencies, and at the Family Support Council meeting on October 25.  Probably the most important new development is that new policies will be accompanied by separate documents on the procedures that will be used to implement them.  Since the devil is often in the details, those procedures will be especially relevant.

Two of the first new policies out of the starting gate are going to have a significant impact for people receiving residential services under DDA’s I/DD waiver.  The first of these updates policies affecting housing for people receiving residential supports under the waiver:  A second one,, clarifies how, and how much, people receiving such services are expected to contribute to the cost of their supports.  (The above links are to my personal Google Drive account and are safe.)

If you or a family member are receiving residential supports from DDA, these early drafts are worth your close review.  Although there may be public meetings at a later point – hopefully in conjunction with the procedures – this early round of comments will be most crucial in helping shape these policies. 

So absolutely, positively, look at these if you’re getting residential services, and let Erin Leveton in the State Office of Policy, Planning and Innovation (SOPPI) know your thoughts, at  Don’t waste any time, do it now!

Sunday, September 23, 2018

When Supporters Need Support

It’s been just over four years now since I began this blog (see “Why I’ve Started this Blog,” August 11, 2014).  This is my 100th blog post.  So I would have hoped to write an upbeat, celebratory essay – but I can’t.  The events of the past few months have been too difficult.  Difficult times can be learning experiences, though, so I want to try to share what I can.

My son receives supports under D.C.’s intellectual disabilities (I/DD) waiver, but he has multiple disabilities.   He’s complicated, and throughout his life with us we’ve struggled to get him the best available services and supports.  We made the choice when he was about to turn 18 (he’s now 25) not to seek guardianship, and we don’t regret that decision.  Our son is independent in many ways, even though he has a lot of trouble making decisions and understanding the implications of decisions he does make.  He has signed powers of attorney which enable us to be helpful, always in close consultation with him.  In most instances we’ve functioned in the way the District’s new Supported Decision Making is supposed to work, except that he may sometimes say he doesn’t want to be involved in a meeting or that he wants us to sign something because it’s more convenient.  (Fortunately, he’s grown more and more willing to act on his own behalf so these cases have become rarer.)

Recent events have caused members of his support team to take very different viewpoints about his disabilities and motivations.  We’re used to such differences of opinion.  What did come as a surprise, though, was when the head of a DDS implementing agency asked why, given his difficulties, we hadn’t sought guardianship.  I was flabbergasted; DDS representatives were silent.  Unfortunately, in this and other ways, rather than admit to shared challenges, systemic problems, and failings by all members of the team, the approach taken has been to pressure and point the finger at the “natural supports.” 

This points to something that I think should concern all my readers, especially those advocating for their family members.  I believe in the District’s move toward supported decision making, and I’m sure it’s going to mean better outcomes for people who have not had any supports outside of DDS and provider agencies.  Yet our recent experience points toward a troubling tendency.  It’s far too easy, and far too common, for agencies and organizations to make life hard for individuals.  This happens all the time, and usually to those who don’t have as much time, resources, and experience as we do.  Human services agencies need to guard against this, and individuals – people getting support, and sometimes their supporters – often need extra help when it happens.   My page, “Organizations and Acronyms you Should Know” (you can click on it over to the right) lists some of the organizations that can have your back in these situations.

In the end, though, it’s up to DDS to curb this behavior altogether.

Thursday, August 9, 2018

D.C. Housing News You Can Use

I know many of you are distracted in the summertime (my readership always dips from June to August).  This summer, though, some folks with family members who receive residential supports in D.C. have been distracted not just by the heat, but also by some hard realities about housing costs.  In this blog post I’ll share some practical information that may come in handy, and not just for those receiving services from DDA.  (DDA is the arm of the Department on Disability Services that administers the I/DD waiver – see my page on Acronyms and Organizations if you’d like to know more.)  So keep reading, all of you…

Although D.C.’s I/DD waiver can’t cover housing costs, DDA uses local funds to pay rent for people up to a designated rent cap.  Traditionally, DDA has allowed the rent to exceed that cap as long as someone reliably pays the excess.  However, recently DDA has been quietly refusing to allow such “top-ups” to take place.

The problem with this is obvious.  People currently receiving residential supports in apartments over the rent cap (or being lifted above the cap by annual increases – see below) are being told they will have to move.  And DDA is placing many new entrants to the waiver program in suburban Maryland apartments. In either case, people are often being told to move away from family, jobs, familiar services, doctors and the like. Whatever the motivation for this change, it does not serve the goal of community integration.  Speak up and be heard on this if you hope for an exception, because they are few and far between.  But you are not alone!  On this or other issues, if you need help with advocacy and you aren’t getting anywhere on your own, reach out to the Quality Trust – - and they may be able to help.  (Full disclosure, I’m on the QT board - and while you’re at it, make a donation if you’re able!)

What’s even stranger about all this is that, just as DDA is taking a harder line on rent top-ups, it may be working on a policy to actually make it easier for people to live where they want.  I’m told this policy will be reviewed in the fall at one of the regular open meetings of the Waiver Advisory Committee, Mondays 2-4 at DDS (contact for these meetings is Gregory Banks,  If you want to be sure the new policy goes in the right direction, let DDS know that.  Let’s make sure community integration is honored in both word and deed.

Now here’s the part that also matters to those not receiving waiver supports.  Last year the council passed a bill which lowers the amount of the allowed rent increase for the elderly and people with disabilities who are in rent-controlled apartments.  To get this benefit, you need to complete the attached form:  (I check my links before sharing and they are virus-free!).  We’ve done this, and it did lower the rent, even though a senior supervisor in DDA told us it wouldn’t (!).  And notice that all you really need is a doctor’s note stating that the person qualifies under the Americans with Disabilities Act (Happy 28th anniversary ADA!).  That means you don’t have to provide private information like a social security number.  So whether the person you support is or isn’t getting residential waiver services, if they’re renting in a D.C. rent-controlled building, fill out the form and give it to the landlord.  It can only help.  

Before closing, I want to thank the folks who have provided much of the above information.  People come to me with information they want me to put out there, and I hugely appreciate it.  I really do need your input and I will respect your confidentiality.  So thanks for the tips, which will hopefully help others.  This blog is a labor of love but I couldn’t do it without all of you.

Monday, July 30, 2018

Eventful July

I’ve had the good fortune to participate in several important local events this month: 

Autism Society of America conference:  I was happy to represent D.C.’s Developmental Disabilities Council at the 50-year anniversary conference of the national Autism Society (ASA).  It was a worthwhile event, with a combination of sessions on important national-level legislation, workplace and education issues, and science and technology updates.  The event was strange in a couple of ways though.  First, in her luncheon address,  Mary Lazare, Principal Deputy Administrator for the Administration on Community Living (ACL) of the federal Department of Health and Human Services (HHS), alarmed many when she seemed to suggest that segregating people with disabilities was acceptable, and she only issued a correction after lots of pushback from many quarters:  Much less of an issue, but noteworthy for a 50-year anniversary event, was the relatively low turnout with only one day of general sessions followed by an advocacy day in Congress.  Given the similarities in format and the limited attendance, I had to wonder why the ASA didn’t just join forces with other disability advocacy organizations at the Disability Policy Seminar (DPS) in April.  It’s better when we band together, and I hope they’ll consider this next year.

National Association of Councils on Developmental Disabilities (NACDD) conference: Following the ASA conference, I joined Alison Whyte, executive director of our own DD Council, along with other local and national advocates for the final “Days of Dialogue” that closed out the NACDD conference at the National Harbor.  As a relatively recent addition to the D.C. DD Council, for me this event was an eye-opener.  It was very helpful to learn about other states’ approaches to training local advocates and following their post-training progress, and also to hear about some of the advocacy organizations that have been spawned by DD council training nationwide.  Alison was featured to talk about the intersectionality of disability and other issues in our D.C. Advocacy Partners (DCAP) training and the advantages of geography in  D.C.’s follow-up with its DCAP graduates.  Here she is! 

Quality Trust Annual Gala:  And finally, last night was our very own Quality Trust’s annual gala event.  It took place at the District Winery in the newly redeveloped Navy Yard area.  The night was beautiful, food and company were great, and the entire event a huge success.  A great midsummer treat, and Hallelujah! The rain held off.

I wasn’t able to attend the Reinventing Quality ( conference taking place right now in Baltimore, but many folks are there waving the D.C. flag and marking the 28th anniversary of the Americans with Disabilities Act (ADA), signed July 26, 1990.  Much to celebrate!

Tuesday, June 26, 2018

Promise and Reality

The Supporting Families Community of Practice meeting on June 14 focused on explaining new law B22-0154, The Disability Services Reform Amendment Act of 2018.  Materials from that meeting - on Supported Decision Making, the end of involuntary civil commitment, and plans for a DDS complaint process - will soon be posted to the D.C. Department on Disability Services Facebook page and the DDS website (  As he usually does – and bravo for him - DDS director Andy Reese was there to answer questions over lunchtime, and Acting DDA deputy Winslow Woodland got on the phone afterward to hear people’s concerns.  Both of them were receptive, but many of the issues raised had come up before – an indication that the day-to-day reality of working with DDS often does not live up to the promise, even when concerns have been raised to supervisors and senior managers.  This is ISP season for many who are receiving waiver supports, providing many such reminders:

-          Scheduling.  On June 14 several of us raised with Andy the consistent problems and energy involved with getting meetings planned around the needs of the person being supported.  While everyone can understand unavoidable emergency reschedulings, the situations cited resulted from a lack of adequate forward planning.  Is this consistent with person-centered thinking?

-          New ISP format and procedures.  Although the new ISP format had been promised for some time, since it was finalized DDS has put little effort into introducing people and families to the new ISP format and procedures.  Apparently there’s a lot of internal confusion as well:  we’ve been given any number of reasons since my son’s early-June ISP meeting why the draft ISP can’t be shared with us, and now, with a June 29 deadline, we’re still waiting.  Does this seem consistent with the priority DDS says it wants to place on Supported Decision Making and family support?

-          Just sign it.  It’s normal to sign a variety of documents at ISP meetings, and some are indeed quite routine.  However, making sure that people understand what they’re signing, and why, too often gets lost in the process. In fact, it’s not uncommon for people to be asked to sign blank documents that DDS fills out afterward.  When I asked for clarification on two documents this year, I was told they were the same as last year and must be signed promptly in order to get the ISP – we complied without getting our answers, and are still (see above) waiting for the ISP.  At a time when DDS is touting personal rights, does it really mean to tell people and their supporters that they should simply sign documents without looking at them?

The quality of day-to-day interactions with DDS matters a lot to those it supports, and people should be able to expect that their needs and concerns will be taken seriously.  On this front, progress still needs to be made.  This is true of bigger issues as well, and I'll write more about those in weeks to come.

Thursday, May 24, 2018

Focusing on the Future

The Disability Services Reform Amendment Act of 2018 - B22-0154 – is now the law.  It was a hard slog, and now comes the implementation - also hard, but so important!  That’s why the next Supporting Families Community of Practice (SF CoP) is going to focus on what B22-0154 is going to mean - for the new DDS complaint system and for Supported Decision Making.  The meeting will take place June 14, 9:30 to 3:30, at 441 4th St NW (One Judiciary Square).  Plan to be there, or call in, if you’ve been reading here about the bill and want to understand what it’s really going to mean for you or your family member.  Here are the details:

But we can’t stop folks!  With this big win behind us, it’s time to set the advocacy agenda for further improvement in the lives of citizens with developmental disabilities in our nation’s capital.  I wrote last time about the talking points the D.C. constituency pulled together at the Disability Policy Seminar in April and our meetings afterward at the Wilson Building.  That was a great start, but advocacy is only really effective if folks pull together around a shared set of objectives.  Setting priorities, then forging a game plan, is hard but necessary, and that’s where my efforts are going to be directed over the next few months.

But in the meantime, a couple of public service announcements!

-          DRDC (see my page on Acronyms and Organizations if you don’t know what this is!) needs your help on primary day, June 19, to monitor how well polling places are doing at ensuring they’re accessible and welcoming to people with disabilities.  Please email Kristina Majewski,, if you can visit one or two polling places to do this important work.

-          The Developmental Disabilities Council is launching a new initiative – Next Chapter Book Clubs ( – in D.C. The goal is to get a bunch of inclusive, multi-age book clubs going across the city – socializing and conversation as important (more so!) than the reading, and there will be plenty of support.  Contact Sudie Johnson ( if you’re interested or can help with sponsorship. 
Find something you can get involved in – it’s on all of us to keep making the future a brighter and better place for our community.

Wednesday, April 25, 2018

Setting Goals and Aiming High

Well.  Some of you thought I had gone to sleep, and I’ll admit I’ve been quiet.  All I can say is that life can sometimes turn your best-laid plans on their head, and that’s been part of my reality since my last blog post.  

This week surely woke me up though, as I represented the D.C. Developmental Disabilities Council, along with executive director Alison Whyte (, at the 2018 national Disability Policy Seminar (  Among others from D.C., we were joined by representatives from Project Action!, D.C.’s prominent self-advocates group, including co-president Thelma Green, pictured here with Alison at the conference:

As always, the DPS was an outstanding opportunity to celebrate the successes of the broader disability community over the past year – including heading off a wholesale rollback of the Affordable Care Act – and to catch up on the current state of proposed initiatives and legislation likely to affect people with disabilities over the coming year.  The main purpose of the DPS each year is to prepare state delegations with the information they need to go up on the Hill and lobby their senators and representatives on Day 3.  This focus always poses a bit of a challenge for those of us living in D.C. since we don’t have voting representation in Congress.  Today, however, a group of us including Alison and myself, Thelma and another Project Action! self-advocate (who also happens to be my son!), along with Damian Miller from the Arc of D.C. and D.C. Advocacy Partner Caren Kirkland, went up to the Wilson Building to meet with councilmember Brianne Nadeau (Ward 1, chair of the human services committee) and with Jessica Giles from councilmember Grosso’s office to discuss issues which D.C. attendees at the DPS had identified as priorities.  Topics we covered in particular included:
-          creating viable and inclusive employment opportunities as stepping stones into D.C. government employment;
-          addressing housing limitations including availability, affordability, and accessibility;
-          improving and expanding alternatives to 911 for people with disabilities who are in crisis, and strengthening MPD awareness through more effective partnership with DDS; and
-          expanding DDA waiver supports beyond intellectual disability, to include people with autism and other developmental disabilities.

Project Action! and other advocates have gone to the Wilson Building many times to speak with the council, but with the recent win in gaining passage of B22-0154 (the Disability Services Reform Amendment Act of 2018), the way is now clear to developing a shared advocacy agenda for the next leap forward.  We were also reminded today that it’s important to approach councilmembers who are not on the human services committee and who may need to hear from advocates in order to understand the impact of inclusion in the areas they oversee.  So we’ll be targeting some different councilmembers on the next visit!

Friday, March 23, 2018

Mayor Bowser Signs Historic Legislation

I was proud to stand with Mayor Muriel Bowser and other advocates on March 20 as she celebrated Developmental Disabilities Awareness Month by signing the Disability Services Reform Amendment Act of 2018 (  Deputy Mayor HyeSook Chung joined her as well, staying for amazing performances, interviews and proclamations at the “See Me for Me” event which took place at the headquarters of the Department on Disability Services.  Read more about this important event at and  I hope that DDS will post pictures of some of the most memorable moments to its website.

If you testified, or wrote a single email or letter to the council as the DSRAA bill (B22-0154) was considered over the past several years, you played a key role as well.  So congratulate yourself on a job well done!

Friday, March 16, 2018


(Unless you were there!) You missed an amazing evening at Lucky Strike on March 8 with Quality Trust and its many supporters!  But you can mark your calendar now for the annual QT gala, at District Winery on July 29, 6:30 P.M.

Sunday, March 11, 2018

Planning Your Financial Future

On February 13 (“Let’s Keep It Moving”), I wrote the following:

Looking ahead, March 9 is the next meeting of D.C.’s Supporting Families Community of Practice (  You’ll remember that there were two briefings last year about ABLE accounts, one on ABLE in general and another about the newly-created D.C. ABLE account.  I wrote about these in my September 18 blog post, “News, News, News,” and then on October 17 in “Thinking About ABLE,” both of which you can find by clicking on “ABLE” in the Search box over to the right.  It was clear from those meetings that it would help to have some more general briefings on budget basics and responsible money management, so the upcoming meeting will focus on that.  I know that Emily Price ( will make sure there is a call-in option for those who can’t make it to DDS headquarters (250 E St. SW, next to the Federal Center SW metro station).

I was proud on Friday to kick off this meeting, which mainly revolved around two presentations, one by Linda Stroman of Capital Area Asset Builders

( on personal budgeting, and the other by Elizabeth Jennings at the National Disability Institute (

on the impact of federal benefits like SSI and SSDI on your personal finance.  Both were exceptional presentations, and you should keep your eye on this website:

where the Power Point presentations and other resources will be posted, I’m sure, as soon as Emily Price ( can catch her breath!

Tuesday, February 27, 2018

A Passing Grade for DDS

I shared my written testimony with the Council yesterday, text below.  You have until tomorrow to do the same -

Testimony by Carol A. Grigsby
D.C. Council Human Services Committee
Performance Review of Department on Disability Services
February 2018

Councilmember Nadeau and other members of the Human Services Committee –

My name is Carol Grigsby.  I serve on the D.C. State Council on Developmental Disabilities as well as on the board of the Quality Trust for Individuals with Disabilities, and I blog regularly on issues affecting D.C. citizens with developmental disabilities at  My son receives waiver supports in D.C., is active in Project Action!, and, I hope, will someday soon be willing to testify before you himself.

I would first like to thank, and congratulate, the committee and the council for having given unanimous support to B22-0154, the Disability Services Reform Amendment Act.  This reform was long overdue, and along with closure of the Evans case, the lifting of the requirement for civil commitment demonstrates that the Department on Disability Services no longer requires court oversight in order to do the right thing for persons with developmental disabilities.  It is now incumbent on DDS and those of us who advise and advocate alongside the agency to ensure that people such as my son receive the right level and type of support from those who care for them, and also have solid recourse when, for whatever reason, the quality of their services goes awry.  I look forward to working with others to see that this is the case.

As I have said in earlier testimony, I fully support the establishment under this bill of Supported Decision Making agreements as a new and less restrictive alternative to guardianship.  However, the availability of SDM agreements must not become grounds to deny those who wish to do so the right to sign powers of attorney, as you or I can.  As Andy Reese stated in his testimony, “People with disabilities can make their own decisions and they have an inherent human right to do so.” This should include the decision to conclude powers of attorney.

With respect to the recent realignment of the Department on Disability Services, I understand and fundamentally support the director’s aim of streamlining and consolidating DDA and RSA shared services.  However, in doing research for my blog I heard a number of concerns that will deserve careful attention in the months to come:

-          The exit of a number of experienced individuals, particularly though not exclusively from the incident management unit (some also noted that the exit of qualified women from influential positions appears to be a step away from diversity)
-          The consolidation of the DDS intake unit under the RSA deputy director rather than centrally under the DDS director or reporting to the DDA deputy (unusual given that determining waiver eligibility is a more time-consuming and complex process than is eligibility for vocational rehabilitation services)
-          The need to recruit promptly for the DDA and Quality Performance Management deputy director positions (as was noted in the hearing as well) in order to ensure stability and leadership at the highest levels of the organization.

I hope that the council will keep close watch on these and other aspects of the realignment to ensure it achieves its desired goals without creating others.

In my testimony last year I wrote at length about the progress that DDS still needs to make in assisting people to achieve competitive employment.  This remains a challenge, as my son’s experience over the past year has continued to demonstrate.  DDS is moving in the right direction and showing incremental progress, but much more rapid movement is needed in identifying partnerships, incentives and other creative and customized approaches to expand employment opportunities for people with developmental disabilities in D.C. – including part-time opportunities where appropriate. There is still much to do in order to make other parts of the D.C. government join in this effort.  My son is already 25, and for him time is slipping away to get a foothold in the world of work.

Thank you for your attention to my testimony, and for the committee’s conscientious oversight of DDS performance as we head into the budget season.

Wednesday, February 21, 2018

Follow-through is Everything, Not Just in the Olympics!

The Valentine’s Day hearing before the Human Services Committee on performance by the D.C. Office on Disability Rights and the Department on Disability Services over the past year took place as scheduled, and you can see it here in full:    The DDS review was dominated by the recent passage of bill B22-0154, and self-advocates in particular turned out to express thanks to the council for its passage of the Disability Services Reform Amendment Act. There also was plenty of discussion about implementing the bill, in particular with respect to the grievance process it establishes, and DDS announced it would be working on this with the advisory group that helped with the recently-approved state transition plan and waiver amendments.  DDS also will be launching, along with advocacy organizations, a process of education and outreach so people will be aware of new rights and procedures under the bill.  DDS director Andy Reese’s testimony addressing this and other subjects, including the recent management reorganization, is here
and can also be viewed in the last 45 minutes of the video, along with Q and A.  Here too is the testimony of Morgan Whitlatch from the Quality Trust for Individuals with Disabilities:

Another topic which received attention in the hearing was the impact of broader D.C. workforce initiatives on the financial sustainability of human services agencies.  These are the folks who hire the Direct Support Professionals providing support to D.C. citizens with disabilities, so the financial viability and livelihoods of these organizations and people are essential.  Ian Paregol, director of the DC Coalition of Disability Service Providers ( gave an excellent overview of the issues (, as did follow-up testimony by RCM ( and NCC (, two of the Coalition’s member organizations.  Nadeau announced that the council is setting up a working group to address these and other workforce issues, which also affect care for seniors in D.C.

After reading this post, if you’re inspired to express yourself, the deadline for submitting written testimony to the committee ( is February 28, a week from today.  Keep it short if you want, but let the council know there are folks who care about these issues as they prepare to consider the mayor’s budget for fiscal year 2019 later this spring.

Councilmember Nadeau at Project Action!

I mentioned in my last post that the chair of the council's Human Services Committee, Councilmember Nadeau (Ward 1), attended the Project Action! meeting on February 10.  Here's the proof!

Tuesday, February 13, 2018

Let's Keep It Moving

Today it’s time for some updates because there’s such a lot happening.

The Project Action! ( meeting on Saturday was a great celebration, as I’d expected.  Self-advocates and others really had put their shoulders to the wheel to get B22-0154 through the council, and the unanimous vote was an amazing accomplishment.  What made Saturday’s meeting even more special, though, was that Ward 1 council member Brianne Nadeau, who chairs the Human Services Committee, showed up with her baby daughter to celebrate along with us and to hear from Project Action! members about other concerns they have moving forward.  With respect to the bill itself, we were also reminded – as if we could forget! – that the U.S. Congress has to get its 30-day review of OUR law before the mayor can sign it.

Next up:  Tomorrow, Valentine’s Day, February 14, will be the performance review of the Department on Disability Services (also for the Office on Disability Rights) before the Nadeau committee.  It starts at 10:00, in room 500 of the Wilson Building at 1350 Pennsylvania Avenue NW.  This year I won’t be testifying in person but I do plan to attend so I can hear what others are saying, in particular about the DDS reorganization.  The committee hearings are always available to watch live or on archived video afterward (, and it’s still possible to submit testimony for a few days after the hearing has taken place.  So keep your eye on this space and I’ll let you know how long you’ve got to submit your written testimony!  Sometime in April the committee will have another hearing to consider the mayor’s budget for DDS.

Another big item on Saturday’s agenda was bill H.R. 620, which aims to weaken the Americans with Disabilities Act and will be considered by the U.S. House of Representatives this week:

Particularly for those of my readers who have a voting representative in the U.S. House, CONTACT YOUR REPRESENTATIVE AND TELL THEM TO VOTE NO ON H.R. 360!  Do it for all U.S. citizens with disabilities, including those in D.C.!

Looking ahead, March 9 is the next meeting of D.C.’s Supporting Families Community of Practice (  You’ll remember that there were two briefings last year about ABLE accounts, one on ABLE in general and another about the newly-created D.C. ABLE account.  I wrote about these in my September 18 blog post, “News, News, News,” and then on October 17 in “Thinking About ABLE,” both of which you can find by clicking on “ABLE” in the Search box over to the right.  It was clear from those meetings that it would help to have some more general briefings on budget basics and responsible money management, so the upcoming meeting will focus on that.  I know that Emily Price ( will make sure there is a call-in option for those who can’t make it to DDS headquarters (250 E St. SW, next to the Federal Center SW metro station).

Many ways to get involved and keep improving life for our citizens with developmental disabilities in D.C. – take your pick!

Thursday, February 8, 2018


You did it – WE DID IT.

On February 6, the D.C. council unanimously approved bill 22-0154, the Disability Services Reform Amendment Act of 2017 (formerly the Citizens with Intellectual Disabilities Civil Rights Restoration Act).

This was a hard slog, a years-long effort, to make the reforms in D.C. disability services that would allow court oversight to end – last year, with the closure of the Evans case, and now, for people with intellectual disabilities receiving support in the future.

This is an amazing accomplishment.  Now we can turn our faces squarely toward the future.

The bill itself is here:
and you’ll find the brief discussion and vote in the council here:
between 1:20:00 and 1:30:00.

Watch the short video and celebrate!  I know that’s what folks will be doing at this Saturday’s Project Action! meeting (10-12 Saturday, Feb 10 at the Kennedy Institute, 801 Buchanan St. NE).

Saturday, January 20, 2018

Get the Courts out of our Supports!

In my last post I was very hopeful about prospects for Bill 22-0154, the Disability Services Reform Amendment Act of 2017 (formerly CIDCRRA), which aims to roll back the paternalistic system of court commitment for people with intellectual disabilities in D.C.  WE ARE THE ONLY JURISDICTION IN THE NATION WHERE LAWYERS AND JUDGES HAVE FINAL SAY ABOUT WHAT SERVICES PEOPLE WITH DISABILITIES WHO HAVE COMMITTED NO CRIME WILL RECEIVE.  To those of you receiving services in this way now, I have the following message:

-          I get it, it’s what you know. Nothing in the bill prevents your family member from continuing the way things are.  Nothing.

-          Have you thought about why the lawyers who have a stake in keeping the system as it is are the ones leading the opposition?  They may be well intentioned, but they are not objective.

-           Please don’t oppose the bill.  Keep what you have but let the rest of us move forward.

To the rest of you:

-          There is expected to be a second vote in the Council, probably on February 6.

-          Opposition is mobilizing. See for an article co-written by a DC lawyer who currently represents people under commitment in D.C.

-          Those leading the opposition to the bill argue that the D.C. government has consistently exploited its residents with disabilities for 40 years.  This ignores the very significant reforms that have taken place, especially over the past ten years.  (See, and to understand where things really stand.)

-          Please do not rely on Project ACTION! and Quality Trust to do all the heavy lifting on this.  If you live in D.C., it’s especially important to write to council members who are not on the Human Services Committee (see page to the right).  These are (council member email followed by key staff member):


If you live in D.C., please write, even if you don’t consider disability issues to be your highest priority.  Tell the council members that you favor bill B22-0154 because it’s time for people with disabilities and those who support them to decide what type of support they need without a lawyer and judge saying so.  (If you have more questions, have a look at 

GET THE COURTS OUT OF OUR SUPPORTS.  We can do this, it’s time to do this.  Please pitch in.