The Evolution of Family Support in NH
By: (The Ageless) Kathy Mandeville (minor edits to account for time passed by - Jack Krumm)

Editor’s note: This article is timeless and demands reprinting in 2010. Originally written by Kathy in 1991, the economic pressures the state faced then are almost identical to the pressures we feel today. What appears different, is the fact that NH had legions of parent advocates such as Kathy. They are needed today, and it is our hope at The Challenge that the examples of those who walked before us, like Kathy, will inspire a new generation of effective Parent Advocates.

In 1987, the members of the New Hampshire legislature were asked to consider passing a bill that would create a Task Force. The mission of that Task Force would be to study the needs of families caring for people with developmental disabilities in their homes, and to make recommendations back to the legislature on how the needs of those families could be better met so that fewer families would place their children in residential care.

Laconia had been closed to new residents and was in the process of relocating its clients back into communities and family homes. The costs at that time for the annual care of a person with severe disabilities were estimated at somewhere around $74,000.

The Division of Mental Health had, through the regional Area Agencies a few years before, made funds available for respite care for families. "Respite" is occasional relief. This program provided skilled people and some funding to make it possible for families to get a "breather" every so often, so that they wouldn’t fall apart. It was really the first direct help to "families" and not just help for the person WITH the disability that the formal disability system had ever provided.

The national trend was to close institutions like Laconia, and to encourage families to keep their children at home from birth on. The Federal government made it an entitlement that all children with disabilities be educated in the least restrictive environment. Therefore, it made all the sense in the world for the NH legislature to determine how it could best help its families. So the bill establishing the Task Force was passed.

The Task Force, composed of nine appointed members and several dedicated parents, family advocates and service providers, met over a sixteen month period. The motto of the Task Force was: "When all is said and done, let there be more done than said." The recommendations reflected the needs, frustrations, pleas, ideas, and solutions from over 350 families interviewed, and input from service providers and disability advocacy groups throughout the state.

The recommendations were to be practical, achievable, and reasonable. The goal was that with the implementation of these recommendations people living in New Hampshire who have developmental disabilities would be better able to develop to their fullest capacities through the love and support of their families and communities, instead of being cared for in isolated facilities at an emotional, ethical and monetary cost to themselves and their families far exceeding description.

The overwhelming need voiced by family members was the problem of getting information - for services, for equipment, for help understanding how they could help themselves and their loved one - and the problem of getting INTO those services and making those services more responsive to their needs as family members.

Families voiced frustration at often being unaware of services already available to them; of not knowing how to enter into services if they moved in from out of state or even across county lines; of information too confusing to understand; or of simply needing to talk with another Mom who has a similar kid.

The Recommendations were released in January of 1989 at an even at the State House called "Celebration." A few weeks later a bill was drafted and introduced that embodied the recommendation of creating a statewide family support network. It became known as the Family Support Bill.

Legislators heard from families whose parents had separated because of the stress, mothers who were exhausted, and fathers working two jobs just to keep minimal health benefits. They also heard families saying that they didn’t want a handout, but a hand-up, and an opportunity to participate in the typical community activities that most New Hampshire families can take advantage of.

The New Hampshire Legislature heard, and unanimously passed the bill. The bill appropriated $500,000 to be available over each of two years under the administration of the Division of Mental Health and Developmental Services. The money would be divided up proportionately among the Division’s 12 regional service areas, and managed in collaboration with the Area Agencies in each region.

The plan for how that money would be used would be determined by local councils made up of family members representative of each region. The families would determine WHAT the needs of families were in their area and decide HOW the money should be spent. The Councils, made up of from 6-15 family members (a total of 120 people throughout the state) convened in the Fall of 1990.

Families living in New Hampshire and caring for a person with a developmental disability, are not alone. Information and support is a phone call away. In all twelve regions of this state, families have someone whom they can call that can help them, and in the 14 months since the program began, there have been approximately 940 requests from New Hampshire families across the whole state.

How has the $500,000 appropriated for each of the two years of this bill been used? During testimony, some legislators had voiced concern that this bill might create another personnel bureaucracy. Family council members didn’t want that anymore than legislators did. Personnel represented only 17% of the original appropriation: the majority has gone directly to families.

What about financial resources outside of the State appropriation? Throughout the state, service clubs, town and city governments, and local resources are being tapped before monies are drawn from the budget. This has amounted to an approximate $7,000, from $25 donations and up.

Additionally, non-cash donations have been sought. For instance, in Keene a family needed a ramp to get their child’s wheelchair in and out of the house. An estimated cost would have been around $900. Two calls from the Family Support Coordinator in that region explaining the purpose of the request resulted in the donation of materials and labor.

Thanks to a pilot project passed by the legislature in 1988, Nashua was first to institute a family support program. They led by example, and were at a point of building on local contributions by approaching major corporations for grants by 1991. They can show that helping families costs a lot less than institutionalizing disabled family members, and they are having some success with these grants.

What about funds already appropriated through the Area Agency system in the state? There was an enormous in-kind commitment to helping families by the Area Agencies. Over $300,000 in in-kind expenses representing personnel and personnel cost-sharing, office space, utilities, travel, xeroxing, office equipment, phone expenses and numerous other contributions were made.

Very costly requests for emergency respite and placement were reduced by provision of regular creative respite options, supported employment, more responsive educational programing and community-based recreation - all at a lower cost, utilizing typical community resources instead of creating specialized programs.

Waiting lists were reduced at the time, in part due to the appropriation made by the Legislature in 1989 with the "Waiting List Bill." But in areas such as respite and residential placement, family support programs have helped families feel less pressured and more able to find creative options.

The creation of the statewide family support programs has required cooperation between families and their respective Area Agencies. This has not always been easy. Testimony heard in 1989 voiced some of the frustration that family members have had with some Area Agencies.

For some Councils, a lot of energy was put into establishing a trusting relationship with the Area Agency. Who would hire the person to work with families? Who supervises that person? Who determines how much time or money can be spent on any one family request? Who knows better - the families or the Area Agency? Collaboration is a working marriage, and it is happening. Many of these questions remain unanswered in 2010.

In Manchester, families felt a great deal of dissatisfaction at how families were helped and what helps were available. There was a great deal of hesitation in having the family support program sit in the Area Agency, fearing that it, too, would become crisis-oriented, uncreative and Moore center-based.

Through many hours of dialogue, the Council and Area Agency agreed that the program would sit within the Area Agency - and that the Family Support Staff would be under the direction of the Council and the supervision of the Agency. The Agency would in addition place the Respite Coordinator under the direction of the Council and add an additional staff position so that there would be more likelihood of success in bringing about the changes mandated by the Council.

Seven months after the original agreement, both the Council and the Area Agency looked back at a program that worked exceptionally well. The family support program at the time benefited from the easy access to services for families already centered at the Agency, as well as several thousand dollars in in-kind contributions. The Area Agency had become more creative and community-based in hearing and responding to the needs of people with disabilities.

Collaboration happened and a partnership emerged. The people with disabilities in the Manchester area and their families benefitted. Over 110 families were served within the first six months of establishment of Family Support.

Calls to the program in the first few months were primarily from families who were "on the edge." They had been waiting for services, in some cases, for years. If the agency could provide the service to the family, member, they had. If it was not a service that was typically provided, or was unfunded, requests had been recorded but nothing happened. Gradually, the staff worked with families around less crisis-oriented activities (e.g., accompanying family members to I.E.P. meetings and application processes for things already available - i.e., Medicaid - Katy Beckett benefits, doctor’s appointments, etc.).

They began helping set up opportunities for children to go to NORMAL day care programs and TYPICAL summer recreational and after-school programs. They helped search out sources of equipment and diapers, and networking parents with other parents whose kids have a similar challenge.

They organized information sessions on guardianship, trusts and benefits; coordinated meetings among local agencies to help them address gaps and duplications that exist. They let physicians and libraries and real estate agencies and service providers and town governments know that there is a central knowledgeable source of information and support for families.

The recommendation to create a statewide family support network was a good one. The programs got off the ground running well and helped families cope. The need for family support was forecast to increase even more as the economic picture in the early 1990’s continued with parents losing jobs, health benefits, employment opportunities for those with disabilities - and costs of medical supplies, food and housing continue to rise.

There are increasing concerns about more children being born at risk of life-long disabilities because prenatal care and food and basic child health is becoming more and more difficult to afford. The Family Support Bill represented only 1 of 25 recommendations made by the Task Force. Most are still in need of implementation, and the majority need no appropriation - just leadership armed with the values so basic to the dignity of a compassionate and free society. The legislature will be addressing all of these issues and hundreds more during the next term. When all is said and done, let there be more done than said.