The Family Support Program provides up to $3,000 in services for families of children with severe disabilities. The state is authorized to approve additional funds to families upon the request of the local administering agency. Under state legislation, 10% of the funds allocated to a county may be used to pay for staff and other administrative costs; the rest must be spent directly for family support services.
Services families may need. The Family Support Program can be used to pay for a broad range of services families may need. As Linda Brown, one of the parents participating in the program in Dane county, has stated, families of children with severe disabilities can have a variety of extraordinary expenses: "Along with the stress that arises from living much of the time on the edge of life, we families deal with things most families never have to consider: occupational, physical and speech therapy; special feeding techniques, utensils and foods, special equipment like wheelchairs, bolsters, wedges, seats, splints, braces, and hearing aids; life support equipment like oxygen, apnea monitors, ventilators, nebulizers and compressors, various tubing, trachs, trach masks, and suctioning equipment. There are even special dressings for all of the tubes inserted and sterile water for all the special techniques. On top of these are countless medications, diapers, usually far past the normal toilet training stage and often special clothing."
The Family Support Program lists 15 specific categories of services a family can receive: 1) architectural modifications to the home, 2) child care; 3) counseling and therapeutic resources; 4) dental and medical care not otherwise covered; 5) specialized diagnosis and evaluation; 6) specialized nutrition and clothing; 7) specialized equipment and supplies; 8) homemaker services; 9) in-home nursing and attendant care; 10) home training and parent courses; 11) recreation and alternative activities; 12) respite care; 13) transportation; 14) specialized utility costs; and, 15) vehicle modification. In addition, the program can pay for the costs of their goods or services as approved by the state.
Needs assessment and family plan. As the first step in participating in the program, families receive a needs assessment and family plan. To be eligible, families must have a child with a severe disability according to state criteria, which parallel the federal definition of developmental disabilities. While there is no income test for the program, families may be expected to share some of the costs of services. Under state legislation, a child is defined as a person under the age of 24. In practice, however, the program is directed at families of children in school. The state must approve services for families of children ages 21 through 23.
The needs assessment looks at the family's existing formal and informal support networks and the family plan attempts to build upon these. For example, a neighbour may be looked to to provide transportation for a child. The plan specifies what services a family will receive through the program. These services may be paid for directly by the agency or the family can be given a grant to pay for them (families must keep receipts).
In addition to providing support services, the Family Support Program is intended to help coordinate other services a family receives. According to documents describing the Family Support Program, "an important role for the family support coordinator or case manager is to act as a kind of service broker assisting the family through the bureaucratic maze of available programs and services. The worker can also act as an advocate in helping the family to make maximum use of community services, such as community recreation programs, medical and dental services, public transportation, and other generic service providers."
Family Support and Resource Center. In Dane county, family support services are provided by the Family Support and Resource Center, a private agency with a board composed of 50% consumers. The center has a range of funding sources and administers the state's Family Support Program. It provides three types of services to families. The first is information and referral for which purpose it maintains listings of services in Dane county. The second type of service is the family support program, which pays for services families need.
The final type of support offered through the center is respite. This
is provided above and beyond other family supports. Families can receive
14 days or 140 hours of respite care per year; but this arrangement is
flexible. The center offers both in-home respite and out-of- home respite
in foster homes. It also has foster care providers on call for emergencies.
The center's respite workers recruit and train all respite providers.