Time to Do the Right Thing on Housing Choice

In my December 28 blog post (“Housing Changes That Could Change Your Life, Part Two”), I wrote about the fact that DDS increasingly is moving people it supports out of the city to keep their rents below the rent cap – resulting in people being uprooted from their communities, and from the city itself – even as they continue receiving D.C. supports and services.  Solutions are definitely needed, but the current DDS “Housing Choices” policy and procedures, even as revised on January 12 (https://tinyurl.com/ya6ezqnw and https://tinyurl.com/yabucokm), really don’t do much to create new choices for people receiving residential supports from DDS.  What they do is shift the risks onto the people it supports and their supporters.  So there remain an awful lot of outstanding questions, and many of these were raised at the January 7 meeting I attended along with other advocates, family members, and representatives of provider agencies. At that meeting, Liz Seaton (liz.seaton@dc.gov) tried very hard to keep people focused on line-by-line feedback on the procedures, but there were many, more fundamental, issues that people wanted to raise, and for the most part Liz had to answer that she would check and get back to us (the same thing I’ve heard in each of the sessions so far on these policies).  I did get one answer when Erin Leveton (erin.leveton@dc.gov) briefly called in and stated unequivocally that if a person’s credit record prevents them from assuming the lease and a family member or other individual is leaseholder, with the person supported as the resident, they still would qualify for residential services such as supported living.  It was good to get that clarification, but it needs to be explicit in the policy and still is not.

That was just about the only concrete answer provided, so that leaves a lot of room for clarification, and even after a further session at Project Action! on January 12, things still are murky.  Several key disability organizations have issued this joint statement - https://tinyurl.com/ybpvz3sd (full disclosure:  I serve on the board of the Quality Trust and have recently become chair of the D.C. Developmental Disabilities Council).  I was glad to see that this statement picked up on some of the concerns I raised in  my earlier blog post, such as the need for a troubleshooting team for the inevitable complexities that are going to arise and the need for concrete DDS commitment to on-time payment (since its failure will affect others’ credit ratings and perhaps also prompt evictions). The DDC/QT/ULS statement contains many other questions but is not intended to be comprehensive and specifically calls for more in-depth, two-way dialogue (not just input sessions) with stakeholders.  This is crucial, because so far, DDS has demonstrated that it doesn’t know what it doesn’t know, and plans simply to learn by doing. 

In addition to the issues I’ve raised that were picked up in the joint statement, there are other concerns I have, such as the need for DDS to post on its website the foreseeable risks to which it’s exposing people, providers and family.  Beyond that, other questions I believe DDS needs to be aware of and address before publishing the policy and procedures include:

-          Eviction dangers.  The joint statement talks about the significant dangers of eviction to which the new policy would expose people, and there are fundamental questions that DDS needs to answer here.  In addition to those questions, I continue to maintain that DDS should plan to have a clearly defined and available respite space for people who are evicted, for whatever reason, to ensure they do not wind up on the street in the meantime.

-          Appeal process.  An issue that I didn’t mention in my last blog post, but which came through clearly from other advocates in the January 7 meeting, is the need for the DDA complaint system to be in place before this policy, or the accompanying Contribution to Costs policy, is finalized.  Unlike the current court-based appeal process, a new complaint process is intended to offer a far more accessible and evenhanded way for people to appeal DDS determinations.

-          The mechanics of payment.  The normal practice with rent top-ups has been for the provider to collect DDS’s funds up to the cap and the balance from the family, making a single payment to the landlord.  Since providers would not be the leaseholders under the proposed arrangements but still would be handling the DDS payment, presumably landlords would be in a position of receiving payments from two sources each month.  It isn’t clear that landlords will find this acceptable.

-          Lengthy DDS approval procedures.  It’s one thing for a landlord to hold an apartment during DDS examination and approval of a prospective apartment if the DC government is the effective renter (by way of the provider agency), but it still 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.

Other issues I’ve raised, such as the fact that insurance companies won’t cover the provider's staff under renters’ insurance, will no doubt be considered by DDS to be the family’s and the provider’s problem, but this is an example of the type of complexity on which troubleshooting staff should be prepared to advise people after the policy takes effect.

I’m certain that some form of this policy and procedures will eventually be finalized, and there is indeed a need for more standardized and transparent approaches to people’s housing choices.  Given that DC citizens with disabilities are increasingly being priced out of the DC housing market, though, it would be timely and desirable for DDS to coordinate with other parts of the DC government to ensure that more housing options are available, whether people are receiving residential services from DDS or not.  Above all, I’d like to see DDS taking more leadership in sensitizing the entire DC government to the needs of this segment of the city’s population at a time when Mayor Bowser is focusing so specifically on affordable and accessible housing options.

When you contact DDS, please reference the joint statement and the need for further dialogue on these important changes.  And I’m happy to include DDS comments on and responses to issues raised above and in the joint statement in a future blog post. I’ve just learned that DDS has promised a further public forum to elicit feedback, but another session in which DDS asks for input, gets many of the same questions and answers few of them, won’t really do the job.  Real transparency, and dialogue, are needed.

Revisiting the DDS Contribution to Costs Policy and Procedures

I made a mistake when I wrote that there was no room for further debate or discussion with respect to the current version of the DDS policy and procedures on contribution to costs of care (“Housing Changes That Could Change Your Life, Part One,” December 28, 2018).  On further review, it’s clear that not everything in the policy and procedures was already fully spelled out in the law and regulations.  Even though the Contribution to Costs regulations were already published in the DC register (https://tinyurl.com/ycnsa43h) and new versions of the policy and procedures were distributed last weekend at the Project Action! Meeting (https://tinyurl.com/y7s39o7j and https://tinyurl.com/y9ewmepd - safe links to my Google Drive account), there are lingering issues that DDS still needs to acknowledge, discuss further with public advocacy groups, and address before finalizing the policy and procedures.  These issues (with references to key sections of the policy, but necessitating changes to other parts of the policy and procedures) include:

-             The need to air more fully and consider the implications of 3.B. of the policy (made even more explicit in the January 12 revision) which makes the residential provider (along with guardian if applicable) fully responsible for ensuring a person has applied for applicable public benefits, with no apparent DDS responsibility.

-             In 3.C. of the policy, the need to include, in addition to the statement that “DDS will not require a person to contribute more than the actual cost of their DDA residential supports,” a more specific statement that the person will not be expected to contribute to the costs of their staffing or other Medicaid-reimbursed supports.

-             The need to state clearly in 3.C. and 4.O. of the policy that, if a person is receiving residential supports and already contributing to his or her own cost of occupancy, e.g. by paying utility or cable bills, that that amount should be deducted from the total amount the person is expected to pay to the residential provider.

-             The need to recognize, in 3.D. of the policy, that if a person’s SSI is decreased due to third-party housing assistance, the amount of that assistance will not be available to the person in order to compensate the difference up to the maximum SSI amount, and that they should therefore still continue to receive their full $100 allowance.

-             The need to acknowledge, with respect to section 3.G. of the policy, that merely documenting the contribution to costs of residential supports in the Individual Financial Plan is inadequate.  People have legal rights to formal written notice individualized to the person's specific financial circumstances and stating what the person is to be charged, how that was calculated, what the relevant laws and policies are, what the consequences are of not paying, and how to appeal the determination (see below).

-             The need to ensure, with respect to 4.P. and 4.Q. of the policy, that people will not be unduly punished by the threat of discharge from residential services because a representative payee or guardian has failed to ensure payment of their contribution to the cost of residential supports.  DDS and providers should instead turn to other less punitive remedies, such as seeking (after discussion and via a transparent and fair due-process approach) to have the delinquent representative payee or guardian replaced.

-             With respect to section 4.J. of the policy, DDS should wait until the DDA Complaint System is operational before putting this policy and procedures into effect.  Otherwise there is no formal recourse in the earliest months of implementation, when many of the most significant unforeseen consequences will become evident.

-             Finally, what is addressed nowhere is the need for troubleshooting staff which I referenced in my December 28 blog post on this issue.  Having such staff will avoid the need for regular recourse to the Complaint System once it is in place, by ensuring that service coordinators, who will not be in a position to address or adjudicate many of the issues in the policy and procedures, will have easy recourse to in-house expertise.

I hope that DDS will slow the train down and take the time to fully consider the above, as well as other issues raised in the Project Action! meeting on January 12, before putting the Contribution to Costs policy and procedure into final form.

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 https://drive.google.com/drive/folders/1h6PCyTDF7rPUxgOl5ntF2f0Ws71CvLu8?usp=sharing 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 13^th 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 http://dcrules.elaws.us/dcmr/29-1934 - 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 5^th 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 (https://drive.google.com/drive/folders/1h6PCyTDF7rPUxgOl5ntF2f0Ws71CvLu8?usp=sharing),

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.

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:

https://drive.google.com/open?id=1wWgY4NVQOclqTFYOx60sFfNZkArTbz2E

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

Getting the Word Out on DDS Policies

Friends,

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 (liz.seaton@dc.gov) 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:

https://drive.google.com/open?id=1WScEJb05-Gf7_ACQ5riFJmWmZpW024X4.

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 13^th, 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 (erin.leveton@dc.gov) 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.

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:  https://drive.google.com/open?id=1iho2AXY4u7SvqXIB5wxHxChB6r_oLv2H.  A second one, https://drive.google.com/open?id=1todDV2dgpZhVbkuTgrEnuoVvqBJxYOT0, 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 erin.leveton@dc.gov.  Don’t waste any time, do it now!

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 100^th 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.

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 – https://www.dcqualitytrust.org/ - 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, gregory.banks@dc.gov).  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:  https://tinyurl.com/y8roygkb.  (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 28^th 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.

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:  https://www.disabilityscoop.com/2018/07/18/talk-segregating-alarms-congress/25296/.  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 (http://www.reinventingquality.org/upcoming/) conference taking place right now in Baltimore, but many folks are there waving the D.C. flag and marking the 28^th anniversary of the Americans with Disabilities Act (ADA), signed July 26, 1990.  Much to celebrate!