At age 21, after school graduation, an individual with developmental or related disabilities is not guaranteed services. Fortunately, historically in New Hampshire, there has been a great partnership between parents of those with disabilities and our policymakers. In the past this included the assurance that resources for continued services would be appropriated in the State budget for those 21 and older.

As background, in 2007, Rep. Cindy Rosenwald, a Democrat from Nashua, and Rep. Peter Batula, a Republican from Merrimack, championed this cause for ensuring continued services through Senate Bill 138. The bill required that appropriate funds for continued care be placed in the budget every two years.Individuals with developmental disabilities and their families fought hard for the bill’s passage. Their advocacy was successful. Governor Lynch signed SB 138, thusassuring that the Legislature would appropriate funds in every budget cycle necessary to provide services to those with developmental disabilities.

Unfortunately, shortly after this, the Great Recession hit. The Legislature put through an amendment to SB 138 during this recession that guaranteed the funding only if the state budget had what the Legislature considered adequate resources. Since then, some level of funding has been given to provide continued service to those who turn 21. However, the funds don’t cover all individuals who need services; thus, a“waiting list” for the Wait List is now in place. The statewide Wait List budget is insufficient for current and projected needs. Without additional funds, New Hampshire will have record numbers of people still on the Wait List by the end of this current biennium (June 2019).

The New Hampshire state budget is created every two years. During this last legislative session, the legislature did appropriate new dollars to support people waiting for services. We, and the families we serve, are grateful. However, the number of individuals who need services continues to grow. As of January of this year, 170 individuals across the state with developmental disabilities are waiting for services.

Here in the Monadnock region, as of early March we have 30 individuals who currently are not getting served, and 23 more who will need our services in 2019. We are working with the Bureau of Developmental Services at DHHS, communicating these numbers and our concerns for those who need services.
Although there is no guarantee, the staff at MDS try to reassure individuals and their families that we are working to get funding. The reality is that after turning 21 they may have to wait. This is a state-wide problem; the state’s Bureau of Developmental Services projects that 316 individuals across New Hampshire with developmental disabilities will not receive the services they need without additional funding.

In the last few months families and area agency representatives have continued to discuss this issue with legislators. Last month, Rep. Rosenwald tried to bring forth legislation to address the waiting list funding, so the issue could be debated by both Republican and Democratic leadership. The Republican leadership of the New Hampshire House refused to allow the amendment to move forward. Meanwhile Sen. Jeb Bradley has also brought forth legislation to address the waiting list.

If we don’t get additional funds, we run the very real risk of leaving vulnerable people without the services they desperately need. That is not what the people of New Hampshire had in mind for supporting people with developmental disabilities.

We are hopeful that our legislators, both Republican and Democrat, in both the House and Senate, will find a way to increase resources this year to help support those currently waiting for services. Individuals need these supports and services.

We will continue to keep you posted as things progress. Your advocacy efforts make a significant difference in helping our state legislators understand the consequences of Wait List underfunding. It is families who bear the brunt, and your voices have the most impact.

Caring for people is neither a Democratic or Republican issue, rather it is an issue for all of us. “People Can’t Wait.”

How is the Wait List built?
The Wait List number is an evolving and revolving number. New additions come on to the list as new or additional needs arise, and reductions are made to the totals as people begin to receive funding or are no longer in need of services.

For Wait List additions, there are three types of situations that are identified.

A. First, there are those people with developmental disabilities turning 21 within the fiscal year, leaving the school system, who now need adult services – category A.

B. Next, there are those newly eligible who are not in category A, who are not currently being served, but will need to start new services. These could perhaps be people who have been under the radar and not in our system for many years but now need services because of some life change – category B.

C. Lastly, there are those already receiving services who have had a circumstance or life change and now require additional services – the C category. These might be people whose primary caregiver/parents have become critically ill or died, creating a need for residential services on top of the day services they might already receive. Or there could be changes in an individual’s own health that require more and/or different services.

The majority of people moved from the Wait List into services have been in the A and B categories. Individuals and families in crisis who are already in the system (category C) are the ones who are most at risk of being left behind as they struggle to get supports in the midst of adjusting to worsening circumstances.