Real New Hampshire Family Stories

Our family has spent years trying to access services and supports for our adult child with lifelong developmental disabilities. What we expected to be a straightforward process has instead become overwhelming, confusing, and emotionally exhausting.

One of the biggest challenges has been navigating a system that often feels difficult to understand and inaccessible. We have received inconsistent information about what documentation is required, different answers to the same questions, and requests for records that are decades old. As a parent, I want to provide exactly what is needed, but it is incredibly difficult when the requirements are unclear or seem to change.

The process also lacks continuity. There is no single person guiding families through the application from start to finish. Instead, families may receive information from multiple staff members, making it difficult to know which guidance is correct when responses are inconsistent. For families already managing caregiving responsibilities, disabilities, and complex documentation, this fragmented approach can make an already overwhelming process feel nearly impossible to navigate.

I also live with disabilities of my own, which affect how I process information and communicate. Because of this, I requested reasonable accommodations, including written communication and the ability to provide information in a way that is accessible to me. Having to repeatedly explain my disability and advocate for accommodations while also trying to help my adult child has added another layer of stress to an already difficult process.

Privacy has also been a major concern. Families should not feel that they must disclose deeply personal or unrelated medical information simply to establish eligibility for services. There should be clear guidance about what information is actually necessary so families can protect their loved one's privacy while still meeting eligibility requirements.

The emotional toll on families cannot be overstated. Instead of spending our time planning for our child's future, supporting greater independence, and helping them pursue goals such as college and community participation, we have spent countless hours trying to understand procedures, gather documentation, and seek clear answers.

I know our family is not alone. Many parents are willing to do whatever it takes to support their children, but the process should not require extraordinary persistence just to obtain basic information or reasonable accommodations.

I hope that by sharing our experience, it will encourage improvements that make the system more transparent, more accessible, and more family-centered. Clear communication, consistent guidance, respect for privacy, timely consideration of accommodation requests, and continuity throughout the application process would make an enormous difference for families navigating these services.

We moved to New Hampshire when my son (now 15) was 6. In our previous state, we easily qualified for the Medicaid waiver and felt that, given our son's critical needs, he would easily qualify here too. We were quickly denied — not because of the severity of his needs, but because they told us we weren't providing institutional care that was unnecessary in his situation.

If the system works at all, it is because of the amazing teachers, therapists, and nurses we've met — and because of the persistence of the parents advocating for their kids.

I have lived in NH for almost 30 years. I asked for additional medical insurance and what I got was a nightmare. Even though the state made the error, I paid the consequences. It has cost me thousands of dollars that I do not have. The state makes a mistake, and who pays for it — never them; always the poorest among us.

I currently have no medical insurance because I was over-income for Granite State Advantage by 1,000 dollars. I have a son with two major medical conditions, and he is Autistic. I'm a college graduate and a licensed nursing assistant. I should be able to afford health insurance and provide for my son as a single mother with all the education I have.

I have a lot more to my story but would love to talk with more Granite Staters in person.

One thing about New Hampshire is that you are placed on two ends of the spectrum — you are either "not special enough" or "too special," and with kids in the middle, we are nothing. We advocate for the middle, but since we can advocate, we're placed on the "not special enough" side, so we get excused.

In the end, New Hampshire is not the right place for us — let alone if you have a medical issue alongside a developmental disability.