Disability Rights are Human Rights... not Special Rights

William Skipworth’s three-part Investigation in the New Hampshire Bulletin revealed unimaginable tragedies and total disregard for basic human rights. When I read about the reported abuses suffered by Steven, Christine, and Lucas, I immediately wanted to learn more about New Hampshire’s system of care for people with co-occurring conditions. The reporting made me feel as though the disabled community, my community, had been pushed back 60 or 70 years into the past. It suddenly felt like a time before we could make choices, live in the community, go to school, vote, travel, fall in love, and live free. It felt like a time before we mattered—but I know the state of New Hampshire can do better! 

Tell me about your work at NCSS? 

My work at the National Center for START Services® centers on ensuring people with intellectual and developmental disabilities have equitable access to mental health care. 

START was designed to address a longstanding gap in our systems—people with IDD experience mental health needs at higher rates, though historically have had far less access to mental health care. At the National Center for START Services®, we work with community partners across the country to build that capacity through training, consultation, program development, and research. 

We’re fortunate to have a phenomenal interdisciplinary team, which allows communities to benefit from both evidence-based practices and ongoing evaluation of systems and programs, supporting evidence-informed approaches. 

But the work isn’t driven by data alone. We lean heavily into the stories of people with IDD/MH, their support systems, and families. You can have all the data in the world, but without the stories, it’s just numbers on paper. The lived experiences of people with IDD help ensure the work stays grounded in what truly matters—building systems that recognize people as whole-individuals with real mental health needs and the right to supports with equity and value. 

Why do you think some mental health professionals aren’t supporting the needs of individuals with IDD? Is it because they may not be able to participate in talk therapy? 

“That may be one factor. In some cases, there is a tendency to view intellectual disability as the primary explanation for certain ways people respond, often labeling this as “behaviors”, rather than fully exploring the possible role of trauma or mental health conditions.  Inevitably, this prevents mental health professionals from getting to the root of what someone’s presenting challenge may be caused by.  We must explore the “why.”  

Assumptions lead to a focus on determining which diagnosis is “primary,” even though people’s needs and experiences can vary from day to day.  We all have mental health needs, though as individuals with different life experiences and needs, our mental health presents uniquely for each of us.  Ultimately, our goal is to ensure people with disabilities receive the support they need to feel their best and effectively manage their mental health symptoms, just as anybody else would.” 

How do we keep everyone not only safe but also living a life of their choosing in our state’s direct care settings?  

We should start by recognizing and learning from the people who are doing this work well and leading by example. Across the state, there are dedicated direct support professionals who are deeply committed to helping people with disabilities build meaningful connections and have valued roles in their communities. Their approach to direct support should be the standard, helping to develop the expectation instead of the exception. This can be achieved by creating opportunities for mentoring and training new staff, as well as highlighting successes regularly. 

At the same time, we need to invest in proactive, rather than reactive, approaches to crisis intervention. Focusing on early support and prevention through a whole-person approach helps keep people safe, promotes long-term well-being, and supports dignity and autonomy. 

Ultimately, true equality and equity depend on ensuring that people with disabilities have access to the full range of services and supports available in their communities. 

Why should the general community care about issues people with disabilities are experiencing in our state? 

Because disability and mental health can affect anyone at any time. And if you’re human, you have mental health needs. 

From where I sit 

I spoke with Nicole Sheaff, a parent of adult children with developmental disabilities and mental health needs who is also an appointed member of the study commission HB-370. This study commission will assess the supports and barriers in place for individuals with co-occurring mental health needs and IDD, which could result in amending RSA 135-C:2. 

There is one problem, though. She said the original study commission was passed in 2024 and never got off the ground. The new commission HB-370 has not begun discussion. However, with some community pressure, it could be underway soon.  

I am sure that if mental health services were as commonplace as wearing glasses, brushing our teeth, or having our blood pressure checked, there would be no need for me to write this blog post. Mental health treatment should be available to everyone! 

If we want stronger, safer, and thriving communities that are inclusive and not exclusive, then we must also have laws that reflect those values. That’s why self-advocacy is important because we should be able to recognize when we need help and have access to it. Needing support does not make us weak; it makes us human.  

Disability rights are human rights… not special rights!