A Letter about IDD Advocacy in North Carolina

[I’m posting here on my site what’s really a letter about intellectual and developmental disability (IDD) power, representation, and authenticity and then adding in some tangentially related thoughts as bullet points, because it’s all too long for LinkedIn. I hope it’s relevant to people in North Carolina and what’s happening here, and if you live elsewhere I welcome you to read on—you’ll catch up (mostly), and parts of it may echo the framing of advocacy around IDD where you live, too.

Also, if you want to respond, please use the Comments option at the bottom, and I’ll certainly approve those messages—in support or criticism—for posting.]

 

My son, Nicholas Hemachandra, is autistic and intellectually disabled. He has additional diagnoses of mixed expressive-receptive communication disorder, obsessive-compulsive disorder, tic disorder, and severe ulcerative pancolitis. Nicholas receives the Innovations Waiver in North Carolina for services and support. I took this pic in December 2022 specifically for this post.

As the Samantha R. court decision in North Carolina, the Governor and N.C. Department of Health and Human Services’ appeal of the decision and recently released policy plan in response to it, and meetings and media coverage swirl around it all and advocacy alliances shift, I’ve had a string of urgent conversations with friends, allies, and government officials.

Personally, I had hoped Governor Cooper and NCDHHS would—and perhaps still hope they will—parlay the court decision into political capital, delivering a concrete plan for ending the waitlist that matched or exceeded the court order and invested much more significantly in the IDD service array broadly and DSP wages specifically. So, I advocated that any appeal be limited to the deinstitutionalization part of the order, and even that be done with care and the clear intent to develop and ensure a more robust array of choice for individuals and families that includes much stronger community-living options and support, including housing, while reconceptualizing the roles of and improving our ICFs (intermediate care facilities), adult group homes, and other private and state facilities, which I think all can have a part to play. 

As I engage in these conversations, and consider my own strengths and failings in them, I hope I am learning and getting clearer about some things. I am going to share here what my own lessons have been.

The key one is this: What we lack most centrally in intellectual and developmental disability work and advocacy in North Carolina is the fierce urgency of now, to use and insist upon the meaning of the famous and essential phrase by Dr. King.

In our groups—our local CFACs (Consumer and Family Advisory Committees), our State CFAC, our advocacy groups, our advisory groups, and our collectives—we know we underrepresent marginalized racial and ethnic communities, including Latino/Latina/Latine and Black individuals and family members.

We also bias heavily away from families who have young children who are developmentally disabled toward families with adult children, a bias that distorts the issues, discussions, and proposals we spend our time on.

These are correctable deficits. We just lack the commitment and will to correct them. It’s a choice.

What I want to highlight especially here, though, is another often-overlooked deficit: that we bias almost completely away from families whose intellectually or developmentally disabled individual is on the waitlist for services—the “Registry of Unmet Needs”—for what in North Carolina is called an Innovations Waiver slot.

The very large majority of people in these groups have a family member who is on the waiver, rather than on the waitlist for it. That bias and distortion is also true for the relatively small number of self-advocates who participate.

Largely as a result of that skew, our advocacy is compromised.

Our advocacy occurs primarily at the margins: mostly cleaning up the system where we’re impacted, trying to make IDD service programs and communications about them slightly more accessible and slightly less dysfunctional, maybe sometimes having listening sessions and tours about the system’s deeper failings, and congratulating ourselves on how serious and important all these efforts and discussions are.

We mean well, to be sure: by and large we are good people who care and try to have a positive impact. Really, though, without admitting it to anyone, including ourselves, we mostly are defending the system and excusing its failings—except for the failings impacting *us*—because we are invested in the system as it is. 

We won’t risk what we have, when what the system really needs is reckoning, revelation, and revolution.

It is radically unacceptable that half the people with significant intellectual and developmental disabilities who need an Innovations Waiver in this state don’t have one. It is completely unacceptable that they don’t know when they’ll get one and that it likely will continue to take more—often far more—than a decade of waiting on the Orwellian-sounding “Registry of Unmet Needs.”

The Samantha R. court decision has flaws, but this isn’t one of them—this failing is the Governor’s, the N.C. Department of Health & Human Services’, the General Assembly’s, and ours.

It’s mine. Once or twice a year as a member of the Vaya Health CFAC or as a visitor at State CFAC, I say out loud that we should never leave a meeting without making a “recommendation” to the Department that it issue a concrete strategic plan with a timeline for delivering Innovations services to all individuals on the waitlist and those who will apply in the future—to end the waitlist—tying to it a plan to hugely improve DSP pay and expand the service array in support of the desperate need.

But I don’t do that at every meeting. I lack the fierce urgency of need and of now. My son has an Innovations Waiver.

Instead, I, too, play at the margins of the system’s failings, perhaps think myself clever for pointing them out, and so fail just as badly as the system itself.

The real recommendation I *should* insist we make at every meeting—until they throw me out—is that at least half of IDD representation at local CFAC, at least half of IDD representation at State CFAC, and at least half of every single IDD advocacy or advisory group in North Carolina be comprised of people who do not themselves or whose family member does not receive the Innovations Waiver.

(Those people lacking it, by the way, are disproportionately Latino/Latina/Latine, so it’s well past time we require good-quality Spanish translation and/or captioning at every meeting.)

To be sure, even to participate those individuals and families would need support services we mostly deny them in the rest of their lives. The irony and short-term hypocrisy are not lost on me.

They may need compensation in recognition of their circumstance and how important their presence is, as well.

But then these individuals and families—often desperate, often falling through, often falling apart—can speak for themselves, and bring their voice and need to the table and make up at least half the table because they are half the population and the part of it in greatest need by far.

If *they* then want to make compromises in advocacy and “be reasonable” with the Governor, the Department, and the General Assembly, those are their compromises to make, not mine.

Not ours, as we currently exist. We don’t have the standing. We don’t have the right.

The truth is we need revelation—and revolutionary advocacy reflecting this recognition and understanding: that everyone needs appropriate services now; that a robust IDD service array of choice, including strong community options, be delivered; that concrete strategic planning and action by genuine experts representing diverse and inclusive IDD populations be done—and that it all likely means, and deserves, a massive recurring expenditure, a tripling of annual spending on IDD in North Carolina.

Is that unreasonable? No. Actually, it’s the only thing that’s reasonable. And if we don’t realize that, if we don’t know that deeply, and if we’re not willing to proclaim it loudly, we have the wrong people not just in government but also leading our advocacy organizations and advisory groups.

This all constitutes a reckoning—of history, of ethics and morality, and of law. It shouldn’t have needed a court decision. What it needs, still, is all of us demanding what’s right.

Intellectually and developmentally disabled people have been discriminated against across history in every population, including marginalized ones. They have been seen as less than human. They have been disregarded, belittled, and set aside at best, murdered at worst and not uncommonly. That all continues today.

But enough—enough of the psychology of desperation in IDD, the acclimation to poverty and lack, the expectation and perceived normalcy that the IDD population and each person in it be at constant risk.

Intellectually and developmentally disabled people deserve better. They deserve lives of substance, well-being, and love. They are precious human beings, just like everyone else.

My son, Nicholas, is a precious human being, just like everyone else.

We have been inadequate in our advocacy and actions for the population of human beings so much like him—and also so different from him, each person unique and worthy.

I’ll finish where I started, with Dr. King, including the “fierce urgency of now” phrase made famous at the March on Washington in 1963 and also used elsewhere, including in this call for “a genuine revolution of values” at New York’s Riverside Church in April 1967:

“We are confronted with the fierce urgency of now. In this unfolding conundrum of life and history there is such a thing as being too late. …

“There is an invisible book of life that faithfully records our vigilance or our neglect. … We must move past indecision to action. …

“If we do not act we shall surely be dragged down the long dark and shameful corridors of time reserved for those who possess power without compassion, might without morality, and strength without sight.”

 

More points (some new, some restated from above) about the passionate IDD conversation in North Carolina right now among administration and DHHS officials, legislators in the General Assembly, agencies, and advocates:

1. Re the Registry of Unmet Needs and eliminating this waitlist for services: The state, the N.C. Department of Health and Human Services specifically, and the majority of our advocacy leadership are trying to let the details frame the commitment, rather than making the commitment and then having that frame the details, order of operations, and prioritizations.

With the way we’re doing it, there’s no timeline that can be committed to, really. So then we’re at the mercy of different administrations, different legislatures in different legislative sessions, changes in federal dollars and policies. Meeting a larger goal is dependent on a host of variables. Then it will be 20 years to end the waitlist. Or 30 years. Or longer, or never, all while we judge ourselves as succeeding on some metrics of overall “progress,” while many thousands of intellectually and developmentally disabled people continue to lack services, access to care, and decent quality of life.

That’s no different from where we’ve been.

In Samantha R., the court, by contrast, provided us with a truly generational opportunity by ordering the deadline be no more than 10 years—a full decade—to end the waitlist. Why would that possibly not be enough time?

Regardless of the outcome of the appeal, we must commit to it—a commitment we all own together regardless of the circumstances to come. Then, yes, we have to work out the best order of operations to get there. Opinions will differ about what the best path is. We can have those discussions and debates.

But the goal should be clear regardless, with a deadline for getting it done. What the court provided in this aspect is not a threat to any decent actor working in the space. It’s a blessing and an opportunity.

2. No plan from the Department warrants full support—ever—without the context of that commitment being made by the Governor and his administration.

3. One thousand Innovations Waiver slots in the Governor’s proposed 2023-2024 biennial budget, if agreed to (as is likely) by the legislature, means the waitlist will be longer, not shorter, after those two years. It will grow. That’s not good enough.

In Samantha, the court requires at least 3,263 slots over those two years, plus an additional number equal to people entering the waitlist and minus any number of people able to have their needs met through other community-based service programs.

Without the context of a larger strategic plan—say, to make up an example, one that has 1,000 waiver slots in 2023-2024 with a large investment in DSP workforce and service array to prepare for 6,000 slots in 2025-2026, as part of a detailed, committed, and fully formed plan for ending the waitlist—the only reasonable response to the Governor and Department’s proposal by any advocate is: This plan is incomplete and therefore inadequate.

4. The roughly 16,000 individuals on the Innovations Waiver have a clear self-interest in prioritizing DSP wage increases over reducing the waitlist. If the 16,000 people waiting for services and support suddenly had the waiver, the first 16,000 would roughly have their staffing cut in half, eventually, and some no doubt would lose existing staffing entirely.

That self-interest is undeniable and skews perspective and advocacy. It needs to be admitted forthrightly: we have been prioritizing those on the Innovations Waiver over those waiting for it.

If the waitlist were cleared, given the DSP crisis and low wages, maybe 30 percent of authorized hours would then be staffed—probably somewhere between 25 and 40 percent.

But for those on the waitlist, the chance for staff goes from essentially zero to a quarter to a third or so. That’s *much* better than zero for those individuals and those families. That, at least, means possibility, some hope rather than pure hopelessness.

Yes, in a larger-visioned strategic plan, both need to happen: increasing DSP pay to $22 plus benefits, building up the service array, and clearing the waitlist. 

But without such a strategic plan—and, outside the court order, we lack a true strategic plan from the government and from almost all advocates—we need to acknowledge, rather than deny, the competing priorities and interests.

5. That’s not dividing the population. That’s giving the full population voice.

There’s been a call from government officials and advocacy leadership to speak with one voice in IDD for clarity and effectiveness, but it’s manipulative and dishonest to ask for one voice when there isn’t one. The differences are consequential and need to be acknowledged, respected, and engaged honestly.

“Speaking with one voice” effectively means silencing the voices of those with less power.

And if leadership in IDD can’t persuade half the population—or a more representative membership in a group—that an approach isn’t in its best interest, you know what? It probably isn’t.

6. There also recently has been a claim that it’s a smarter, more effective strategy to address DSP pay before—or at least ensure it happens in concert with—waitlist reduction. But that’s just unknowable.

If you believe it, include those without the waiver as half the strategy/decision-making team—again, because they are half the IDD population—and then persuade them about the strategy.

Because it could well instead be that having staffing of all authorized hours at 30 percent, rather than 60 percent (just a guess until the public gets better statewide data, based on Vaya’s rough percentage of authorized hours delivered as about 62 percent in 2020-2021 during the pandemic, down from roughly 81 percent in 2018-2019), would be more effective as a claim to persuade the Governor to advocate more effectively for, and to persuade the General Assembly to more seriously consider, larger wage increases and to increase public outcry.

Then, more than half of the authorized service hours for people with significant IDD wouldn’t be staffed. Maybe only a third of hours would be staffed, with two-thirds unstaffed.

It could well be *that* situation garners greater attention, commitment, energy, and action and is actually superior strategy for increasing DSP wages. Right now those larger deficits for the entire population are somewhat hidden, obscured by the penumbra of the RUN (Registry of Unmet Needs).

Convince the people lacking the waiver and their families otherwise if you indeed want to put DSP wages ahead of waitlist reduction in our advocacy prioritization, which we have been doing explicitly and repeatedly.

7. Re DSP pay: At $22 an hour ($45,000 annualized) with benefits I can attract and retain a robust DSP workforce in IDD. At $18 an hour without benefits, I can’t—I’m still losing out on many workers to fast-food operations and Walmart. So why would *advocates* be championing a number that may help with retention but still won’t attract a remotely adequate DSP workforce? Advocates should want to end, not extend, the DSP workforce crisis in IDD. Their policy advocacy should reflect that ambition, not assume we cannot do better than ineffective halfway measures. And they should embrace and utilize the political capital of the court order, rather than refuse it, in their efforts.

8. Another claim being made by the Department and many advocates: that the 1915(i) waiver is so “exciting”—I’ve heard that word used by DHHS officials repeatedly in the past few weeks—and potentially great that it might reduce the waitlist and better serve those on it, even with its service definitions not yet established.

If any advocate is really confident about that, by all means, give up your family member’s Innovations slot to someone on the waitlist, because your family member will be using the 1915(i) instead.

At the point we have some takers for that, I’ll be willing to consider the 1915(i) waiver as genuinely relevant and not just wishful dreamscape and rhetoric about someone *else’s* life and well-being that shamefully distracts and softens our advocacy around eliminating the waitlist for Innovations now.

9. What about the “We tried that and it didn’t work” (community-based services and deinstitutionalization in North Carolina, in mental health specifically) argument? Well, maybe. Or maybe we just did it poorly. It’s like a company. If you take the same company with the same vision and outcome goals, and give it five different leaders, plans, staff, or funding levels, some iterations might well succeed in getting there while others fail.

Learning from mistakes doesn’t always mean disregarding context. Some things are hard, and sometimes the thing that was tried and failed is still the best thing to do, as well as—sometimes—the necessary thing. Also: mental health and IDD are different. Also: if something is being done and not working, that’s as much on us as anyone else to fight to correct in as close to real time as possible.

Let’s not preclude more and better community services and programs due to past failings. Let’s learn from those failings and do much better.

10. In North Carolina, through various twists and turns, IDD is seated alongside mental health, substance-use recovery, and TBI in one division in the Department of Health and Human Services. There are intersections, of course, but the work being grouped together is more unlike than like. The needs and goals are different. Sometimes people in the Department—off the record and off the Zoom call, or after they leave the division—admit that it’s too much.

Without diminishing at all the significant needs in behavioral health (mental health and substance-use recovery) in North Carolina, IDD has been consistently shortchanged in leadership, voice, and action by the Department in recent years. Hence: no concrete strategic plan has been developed, and now we have a two-year plan that only was created in reply to a court order and released with the announcement of an appeal—and completely lacks the context of a larger plan and firm, specific goal commitment.

If the Department can’t do its job in IDD adequately as currently structured, let’s admit it, reorganize, and staff and fund it better—more expertly, more ambitiously, with greater vision and stronger leadership, and with lived experience better represented.

11. The state has vastly underspent on IDD and left most—half, at least—of the people with significant intellectual and developmental disabilities desperate and/or without services and/or often in poverty and sometimes homeless.

That the state has under budgeted in IDD for a very, very long time means the price tag and effort for correction is massive. But that’s no excuse. In fact, it’s the opposite: it clarifies the obligation, as well as the need and urgency.

 

[Pictured atop this post: my son Nicholas Hemachandra in 2013 with TEACCH therapist Jon Blalock at the Asheville TEACCH Center.]

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4 Comments

  1. Thank you, Ray, for continuing to shine a light on issues for people in North Carolina who are intellectually disabled. It is long past time people with disabilities have seat and a voice at the table alongside our legislators and those who manage the funds and services at DHHS. The system talks about person-centered lives but does little to actively promote it. This is not a disability issue, it’s a social justice issue and oppression, regardless of the group, contains the same elements.

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  2. Ray, thank you for your letter and your wisdom. I’m in Virginia and while my adult son with autism has the ID Waiver (considered the Cadillac of waivers here), he does not have the services he needs to support him living in the community. While the DBHDS website touts Community Coaching, Job Coaching, etc., there is nothing available.
    My son’s story is a tragic one. He suffered neglect, human rights violations at the hands of Good neighbor Homes, Inc. Mountain Road home (documented). Nothing was done. Fancy paperwork, the company’s ID Director lied to Licensure; they accepted their response. Bottom line: my son is now damaged. Even With the waiver, the services just aren’t there. They blame Covid. No, it was like this before.
    Ten years After the DOJ V Commonwealth of Virginia Settlement Agreement to stop warehousing its citizens with ID in state mental hospitals, little has changed.
    VA is today only in 55% compliance. That’s an “F;” on a test.
    The Olmstead ruling by Supreme Court 23 years ago and made part of the federal Americans with Disabilities Act has proved meaningless in any practical way.
    What do we need to do to rights enforced in a meaningful way?
    Who is responsible in Virginia, in North Carolina for ensuring Olmstead is happening? Do we need to March at the Capitol in our state, in Washington.
    The suffering I have witnessed and experienced is cruel and torturous.

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  3. Thank you, as always, for your well thought out discussion of this crises facing individuals and families with I/DD. This statement is so painfully true for so many…“We are confronted with the fierce urgency of now. In this unfolding conundrum of life and history there is such a thing as being too late.” As the number of aging caregivers continues to grow, the always persistent question, “What will happen to my loved one when I’m gone?” becomes increasingly worrisome. What indeed is the State doing to address this?

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  4. I can’t thank Ray enough for putting my feelings into words. At my age, urgency is something I feel on a daily basis. My son has been on the Registry of Unmet Needs (that name in itself should make everyone cringe) for 13 years with no more idea of where he stands than the day he joined the waitlist. That’s longer than it took him to complete his K-12 education. He fought for those 12 years to be recognized as worthy, and then completed 4 years at a ranked university. That was 13 years ago, and he is still waiting for a shot at a “meaningful” life which is the term the system has come to use. He is losing hope as he approaches his 36th birthday. And our family feels we are the lucky ones. He receives some services while so many have nothing. They are either part of a marginalized population or are so overwhelmed by surviving that they are unaware that they may be eligible for services and supports. There are more individuals languishing on the waitlist than are currently being served. That is shameful, and NC needs to do better. It shouldn’t have to take lawsuits and court orders to force change. The appeal hit many advocates in the gut. We have an Olmstead Advisory but have issues being addressed that are decades old. We need a plan with teeth – timelines, benchmarks, penalties (?) – and to collect the necessary data to confirm we are making progress. Those in power need to be held accountable or be shown the door. At my age, good intentions are not enough. It is painful for me to watch so many families suffering, waiting, hoping beyond hope for a sign that their loved one will have more options for that “meaningful” life as part of the community of their own choosing. They shouldn’t have to wait a lifetime. Ray is also correct that we need to pay more attention to the children. It’s not up to the overwhelmed school system. We talk about integrated whole person care. Early intervention is critical with a high return on investment. Thank you Ray for expressing and sharing your thoughts. They echo what I have been feeling. We as a state and fellow human beings need to recognize the urgency and formulate a plan to address our failings for this neglected population.

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