My Turn: Unspent money for developmental services is a serious failure of our safety net

Last modified: 9/17/2015 1:35:06 AM
On Monday, the Monitor reported that the Department of Health and Human Services failed to ensure that individuals with developmental disabilities received the services and supports they need, despite the fact that $20 million was available for that purpose. In May, near the end of the biennium, nearly 140 people who were eligible and in need of services were waiting.

At the Disability Rights Center-New Hampshire, we often talk to people who are on the state’s wait list or to their family members. Most of the people who call us are experiencing serious hardships due to the lack of services. Some are desperate.

∎ A mother and sole provider for her family has to quit her job to take care of her daughter when she turns 21 because her daughter is on the wait list and will not receive timely services.

∎ A 33-year-old man with autism is scheduled to leave the hospital and has nowhere to go. He wants to work and needs supportive day and residential services but remains on the wait list.

∎ A 20-year-old man with autism whose mother is dying may end up homeless because it is DHHS policy to not provide meaningful residential services until after the individual turns 21.

∎ A 21-year-old woman who is self-injurious has been in a medical hospital for months because the area agency has not found a community placement for her.

These personal stories are all too familiar. Most of the individuals on the state’s wait list turning 21 have been known to the developmental services system for years. The law requires that planning start early enough so that there is a seamless transition from school to adult services, without any wait. The system was designed to protect against having young adults lose skills that they and their schools worked hard to develop, and to ensure that parents can continue to work to support their families.

With years to prepare and laws in place, families should not have to experience the bottom dropping out when their child turns 21.

For older, newly identified adults, by law the waiting period is not to exceed 90 days. Yet people often wait many months or years before services are in place. Aging parents struggle physically and emotionally to provide the support their adult children need, and individuals with disabilities are denied the quality of life they deserve. There are individuals languishing in hospitals, jails or other institutional settings, and young children with very severe disabilities going without needed services.

For all of these individuals, and their families, it is of little solace that the department is “having a number of discussions and trying to find out what happened,” as stated by the commissioner. Our safety net wasn’t there when these families needed it.

A DHHS spokesperson noted that one reason for the unspent dollars is related to “workforce recruitment and retention” problems. While delays in getting services in place may be caused, at least in part, by the difficulties in hiring and retaining staff, the department has long known that low wages and lack of training are two critical factors. Higher wages and training for direct support workers are part of the answer. It is time that recognition of this issue translated to long-term fixes of the problem.

Finally, the department has failed to ensure that individuals have adequate budgets to support necessary services and to hold area agencies accountable for unnecessary delays. The DRC sees tremendous variability in the types and quality of services that the area agencies around the state deliver.

New Hampshire was once a model for the rest of the country in providing high-quality, cost-effective services for individuals with disabilities. Our state knows how to do this. It is time to ensure that the state clearly identifies and articulates where the failures in the system lie and dedicate ourselves to ensuring our resources reach those in need.

(Amy B. Messer is the legal director and incoming executive director of the Disability Rights Center-New Hampshire.)

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