My son, Nicholas, is 23, intellectually disabled, and autistic. He has a good life. But most North Carolinians with significant intellectual and developmental disabilities lack the services and support he receives.
In North Carolina, about 14,000 people — including my son — receive the Innovations Waiver. This Medicaid waiver is our state’s primary home- and community-based services (HCBS) support mechanism for people with significant intellectual and developmental disabilities, or IDD.
But several thousand more than that — 17,500 people with IDD — are on the waitlist for the Innovations Waiver, according to the state’s own Innovations dashboard. So, in North Carolina we have more people with significant IDD on a waitlist for Innovations Waiver services than receiving them.
Of those on the waitlist, roughly one third receive some partial services. Two thirds receive no support or services at all. The “wait” usually exceeds 13 years — and even that timeline depends on the state funding additional waiver slots, which is unpredictable and inconsistent.
There is no group of North Carolinians more vulnerable and at risk than those with significant IDD. But as a larger community and society, we rarely talk about them.
These precious intellectually and developmentally disabled North Carolinians are born in families of every socioeconomic class and every partisan political group — among Republicans, Democrats, third-party members, and independents. They are part of every demographic population, including every racial and ethnic grouping. They are white, black, Hispanic, Asian, Native American — every such identity designation. They live in every region, every city, and every town in North Carolina.
They are us.
When we fail these intellectually disabled human beings — and we are failing many, if not most of them, especially among the adult IDD population — they do not receive proper care. They are frequently in crisis. They become ill. They become homeless — making up a significant part of our homeless population. They are victims of sexual violence and sexual abuse at truly unfathomable rates. They become substance dependent. They die prematurely, and, perhaps even worse, live awful lives of desperation, marginalization, and genuine suffering. Often, all of these tragic outcomes occur not because of their disability but because of profound deficits of care, connection, and inclusion.
These are real people — real North Carolinians — living and dying in real lives.
My child’s life tells the story of what can happen when support and services are made available. It’s not a perfect story, but it’s a good story. My son has had an Innovations Waiver — it started as a CAP Waiver — since January 2010. In addition to autism and intellectual disability, he has co-diagnoses of severe mixed expressive-receptive communication disorder, obsessive-compulsive disorder, sensory integration disorder, socialization delay and impairment, and tic disorder. When he received the waiver, he was frequently prone to tantrums and self-harm.
Nicholas also has a physical disability: severe ulcerative pancolitis. When that onset, Nicholas lost 25-30 pounds and was hospitalized for a month. He now receives medication at an infusion center for several hours every eight weeks.
At 23, Nicholas lives with me in an apartment in Arden. He volunteers weekly both at MANNA FoodBank and at Asheville Buncombe Community Christian Ministry (ABCCM). He is able to work a few hours each week at a paid job at an ice cream shop that has extra support for its workers with disabilities. He has social connections through community groups and therapeutic recreation programs. He swims and shoots hoops at the Y. He likes to go on walks, and he’s an impressive juggler. He has a girlfriend, who also is autistic and intellectually disabled.
Nicholas can never live independently without support. But he is not in an institution, and he is a vibrant, valued, and contributing member of his community. So much of his life is possible because of the services he receives, in combination with a dedicated parent and a community support circle. He has always had smart, respectful, and compassionate care workers, and they help anchor his well-being and community participation.
Without the Innovations Waiver he received at 9 years old, I truly believe — I know — most of this would not have been possible. I want the possibility of such lives for all our children and adults with significant IDD.
Our waitlist means that many — most — people with IDD lack needed support throughout their entire childhoods, when certain therapeutic services might be most effective and impactful and have the potential to change the course of their lives for the better.
We have seen, recently, the partnering of legislators of both parties, including Republicans and Republican leadership, working in bipartisan fashion with NC Department of Health & Human Services Secretary Kody Kinsley to improve our behavioral health — mental-health and substance-use — service array. Behavioral health is a close neighbor to both IDD and traumatic brain injury (TBI) in the way our North Carolina systems — and the relevant division in DHHS — are organized. But, although there are intersections, IDD and TBI are also fundamentally different in needs and effective solutions.
I’m asking for the focus and actions to shift to IDD now. I would extend that to include our TBI population, as well, and the TBI waiver.
We know the spending is significant. We also know it’s an economic driver — our service and support system heavily involves working-class people who mostly spend their income, spurring economic growth in cities, communities, and the state. More importantly: we know it’s the right thing, according to our moral and ethical beliefs and our consciences. It’s who we want to be as North Carolinians and as a state. We want to support families and one another and take care of our children and adults with significant IDD.
North Carolinians with IDD should not be on waitlists for support and services. They should be receiving them. We must do better for the most at risk among us — for the most at risk among every single group of us.
For policy makers and the public, please: let’s have the conversations, wrestle with the costs and planning, and make public commitments and substantive agreements to prioritize, reduce, and finally end the waitlist for Innovations Waiver services for intellectually and developmentally disabled North Carolinians.