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Betsy McNamara: State is underfunding its legal responsibility to provide disability services to those 21 and older

  • Betsy McNamara and her son Samuel Habib. Courtesy

For the Monitor
Published: 4/18/2018 12:20:06 AM

The wait list. It didn’t take long into my life as the mom of a child with a disability to learn those words. The first time I attended a hearing to urge our legislators to fully fund the wait list was 15 years ago. My son Samuel was three.

He is 18 now. If it was concerning to me then, it’s terrifying today.

Eleven years ago, the New Hampshire Legislature voted overwhelmingly to pass a law that required fully funding the services needed by all adults with a developmental disability or acquired brain injury, thereby eliminating the wait list of people going without services.

For our legislators who passed this law eliminating the wait list, this must feel like Groundhog Day. Why, if we took care of this in 2007, are we still talking about this?

This is what I would like our legislators to know: The number of people with disabilities in the state is ever changing. Every day young adults turn 21 and need funding. Every day, people acquire a disability be it through a motorcycle accident or an illness. You can fix it this year, but that doesn’t mean the issue goes away.

Believe me, I had hoped that one fix would do it, too.

As background, young people with disabilities receive vital services through Early Supports and Services and their school district until they are 21. The day a person turns 21 they move to the system that serves adults with disabilities.

In New Hampshire, 80 percent of people with disabilities are cared for by their families with support from the adult developmental disabilities system. This is an unusually high percentage of family care, designed to support people with disabilities in their communities and not institutions. It’s a cost-effective, community-based system – if families have the services they need.

The waitlist is literally a list of people with disabilities who are 21 and older, eligible for, desperately need and lawfully required to receive developmental disability services that support their daily lives.

But the state is not allocating enough funding to go around. So if you turn 21 and are placed on the waitlist, you do not receive services.

As a snapshot, as of today there are 170 people on the waitlist. By not funding the waitlist, the New Hampshire Legislature is violating a law is overwhelmingly passed in 2007 (unanimously in the Senate and 300-5 in the House).

The current budget provides enough funding to serve 509 people coming into the system in the biennium. But there are a projected 825 people who will need services. This means that 316 people will be without services by June 2019.

And this list is always changing. On any given day multiple people with disabilities turn 21. On any given day a 40-year-old without a disability could fall off a ladder and acquire one.

When Samuel turns 21, he will continue to need a direct support professional to help him with all the things you and I do during the day: brush teeth, get dressed, take college classes, work and go out with friends. Services mean the difference between Samuel being an active, involved part of his community and being stuck at home.

For families, services mean the difference between caregiver parents being able to work and earn a living versus staying at home to care for an adult child – which can lead to a financial disaster.

Partially funding this issue must feel to legislators that they are doing something. But for the 316 projected people and families stuck with nothing, and to all those families with underfunded services, the impact is devastating.

Consider this: If an 80-year-old parent of a 50-year-old adult with a disability decides they just can’t do it anymore, that 50-year-old goes into a nursing home. This is a tragedy for that individual, who could have been a vibrant part of the community. And it is a tragedy for the state because care in a nursing home will cost three to four times the cost of care by a family member.

Here is my message to legislators: fully funding the waitlist is the law and it staves off financial and human disaster later. Fully funding the waitlist will require additional funding every single year.

Not funding or partially funding the waitlist year after year is like me not paying or partially paying my mortgage each month. It’s not sustainable. Eventually the system will collapse, costing exponentially more in state dollars and human tragedy.

Back in 2003 when I first testified about this issue, I thought surely the state will have fixed this issue by the time my son turns 21. Now he is 18, a senior in high school with great excitement about his future, and 2½ years away from turning 21. The waitlist is still very real, and I am scared.

(Betsy McNamara lives in Concord.)

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