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Workforce Shortage, Underfunding: The Service Waitlist for Adults with Developmental Disabilities

U.S. Navy Mass Communication Specialist 3rd Class Daniel Viramontes, Wikimedia Commons

Adults with developmental disabilities in New Hampshire have long struggled to find adequate support once they leave the school system. This legislative season, lawmakers will vote on a bill that would give a 2% raise to workers who care for these Granite Staters - with the aim of boosting the workforce serving this population.  

Producer's note: Find additional links to resources for families, companies, and advocacy groups on the original show page, where you can alsolisten to the full conversation

Falling off a services "cliff":

An individual with developmental disabilities (intellectual challenges that require life-long care, and inhibit independent living) is entitled to services through the school system, with support from local area agencies, until the age of 21. Some families and caretakers for these individuals describe the experience of losing these entitled services at age 21 as being like "falling off the services cliff." Once an adult reaches age 21, the services that the family once received from the school system and from the area agencies must come entirely from the state through Medicaid waiver programs that are matched by the federal government. 

These services include day programs, at-home respite, transportation to appointments and activities, and work skill development and placement. Often, these services allow the individuals to continue developing the skills they learned in school, and find meaningful employment. This support also gives family members and caretakers the chance to work and provide for the family. 

For years, New Hampshire has struggled to provide adequate state funding and services for adults with developmental disabilities. As of November 2016, 176 people remained on the waitlist (find the link to this report below). 

Christine Santaniello, the Director of the Bureau for Developmental Services, says that it is difficult to predict the number of adults who will need services, and also the cost, because planning needs to be done eighteen months in advance:

If something changes [with the individual or their family], either good or bad, we have to adjust, and we don't always have the flexibility to do that.

Workforce shortage adds to the challenges:

Even if there is sufficient funding for services like at-home respite, there are not enough workers. As of December 2016, 234 direct support provider positions were unfilled.

A family may receive money through a Medicaid waiver for a full-time nurse, but not be able to fill the position. Jennifer Bertrand, Vice-Chair of the Council for Developmental Disabilities, and mother of four children, including Chloe, a seventeen-year-old with profound developmental disabilities, says this has been a challenge for her family:

It was more than a year that we put out ads in different places and got some potential employees... And then, because of low unemployment, there were other, more attractive places. We can't offer full-time work and benefits because Chloe doesn't need 40 hours a week.

Santaniello says:

For ten years, I led an area agency, and it was really difficult to increase wages, health insurance, all of the things that make it a career. And I think, as developmental services, we want people to do this as a career so they don't come in and out of families' lives...Jenn and other families are letting [direct home support workers] into their homes and into their lives, and to have that constant turnover is really difficult...It's a state issue.

Sandy Pelletier, President and CEO of Gateways Community Services, an area agency in Nashua, agrees:

Our direct support workforce are really the fabric of the work we do every day. They make the difference in people's lives on a day to day basis. And when we have that many open positions, we're really challenged with our ability to recruit those individuals.

The cost of at-home family support and institutions:

Since the closing of Lakeview Neurorehabilitation Center in 2016 (read more coverage from NHPR and Reveal's in-depth investigation), New Hampshire does not have a state institution for adults with developmental disabilities. This leaves the area agencies, and these Medicaid waivers, as the only service for adults who require services. 

Santaniello says that it is in the best interest of the state to provide at-home care, rather than institutionalization, especially when the family of an individual is able to help, because it is much more cost-effective:

The cost to serve someone in the community is so much less expensive. I want to say our average cost across all of our services is maybe $44,000 a year [per individual]. You compare that to someone who's in an institution, you're talking $300,000 a year.

Pelletier says that providing assistance to adults with developmental disabilities also allows them to thrive in their community and give back to the state:

I've witnessed a lot of students come out of schools and go into programs that help them become employable and they have part-time jobs. They learn to use the Nashua public transportation, and their level of support is much smaller. They don't need as much service, because they've gained so much independence.

Bertrand shares her own experience with seventeen-year-old Chloe, who has an internship at Marshalls:

We're working in making sure that Chloe is being employed in the community so that she can earn up to what she can, that she has civil rights-wise the same opportunities as anyone...People tell me all the time once they have an opportunity to get to know Chloe, she's on the high school bowling team, she did "Girls on the Run" back in elementary school, they are just so grateful for having the opportunity to get to know Chloe and the things that she can do. And they feel that their life has been enhanced...I urge parents to work towards making sure [their family member is] out in the community, and working, and volunteering, and engaging just like anybody else would.

The impact of family involvement:

Listener Amy from Peterboro asked why a family like Bertrand's would have more children after the birth of a child with a developmental disability, like their seventeen-year-old daughter Chloe. Bertrand has one daughter who is older than Chloe, and two sons who are younger than Chloe. 

Bertrand says: 

Once we realized that Chloe had a developmental disability (and she wasn't diagnosed with autism until she was nearly five, by the way), I really wanted to make sure that Sydney [Chloe's older sister] had a sibling to be able to have some support in looking out for her sister, because I'm not going to live forever...And I would also say that because of the wonderful opportunity that Chloe's siblings have had - in knowing her and growing up with her - has given them a deep sense of compassion, understanding...Because they have a sister who experiences a profound developmental disability, they have already advocated for their sister at their local schools. Sydney, my oldest daughter, has gone, during the last biennium budget, and she testified in front of the House Finance Committee, and as a result, I feel like [Chloe's siblings] will be much more engaged in their democracy, and in their civic responsibilities.

Bertrand also points out that families provide extensive additional care for their family member with a developmental disability that helps save the state money: 

Parents with children, and adults with children who have developmental disabilities work around the clock to provide caretaker hours, additional transportation and things. And especially when they become adults, that results in millions and millions of dollars of savings to the state, because [the family is] not legally obligated to provide those things, but they continue to do that because they love and care about their family members.

Santaniello agrees:

About 80 percent of individuals with disabilities live with their families, and I think it is really important that the Bureau, and the state of New Hampshire, understand and respect the commitment that families are making. And it really helps us in the long run, because when we have our waiting list dollars, we are actually able to stretch them much further, because a family like Jenn [Bertrand's], her daughter Chloe will not need 24/7 support. But Jenn needs a certain amount of support so her family can continue to thrive.

Below is a chart tracking the number of people on the Developmental Disability Services wait-list from 2006-2016.

Credit Bureau of Developmental Services

To read the full report from the Commissioner of the Department of Health and Human Services, Jeffrey Meyers, click here

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