Indivdidual & Family Support

Note: The following represents a recent revision of a list originally compiled in 2004 and forwarded to the Agency of Human Services. In June 2006, the Individual and Family Support Committee considered the status of items subsequent to the reorganization of the Agency of Human Services. Comments in italics indicate recent or pending developments.

1. Care hours authorized under adult and children's programs (e.g. Personal Care Services, High Tech program, Home and Community Based Waivers, Attendant Services) are often substantially unfilled. While there is undeniably a caregiver shortage, this shortage is greatly exacerbated by AHS systems issues including inadequate state reimbursement rates, inconsistent rates between programs (including a lack of parity among Medicaid reimbursement rates), and the lack of accountability from either the state or its designated agencies for the services not provided.

The DAIL study of the direct care workforce authorized by H. 881 in 2006 should begin to address this issue.

2. Case management/service coordination services help provide significantly better access to services for Vermonters, yet comprehensive, coordinated case management is seldom available or provided. Case management is a required service under EPSDT for children receiving Medicaid, but is provided on a limited basis, if at all.

The Unified Care Plans for some families has help for those families with access to the approach. This option should be expanded where relevant.

3. Individuals and families self-managing services (Personal Care Services, Developmental Services, Attendant Services Program, etc.) need greater supports and information on provider recruitment, training, and required paperwork processing.

Efforts at systems improvements are being made with Transition II and other AHS initiatives regarding systems improvement. Success of these initiatives from a consumer and family perspective should be monitored.

4. Access to state programs is very inconsistent across the state for individuals with the same diagnosis or functional challenges. Access to Developmental Services is inconsistent from area to area depending on designated agency and whether an individual qualified for services before the suspension of the System of Care Plan. The availability and scope of available mental health services also varies by designated agency and, in the case of children, by school district, and the ability of the parents to advocate and navigate a fragmented system without case management services. Criteria for eligibility for the children's High Tech program and Katie Beckett are such that some children with are left without services while other with similar functional needs receive services.

5. Access to Mental Health Services and supports for children with mental health/behavioral needs and developmental disabilities is much easier for children who are in state's custody. In some case parents must, or may be encouraged to give up custody of their children to get needed services and supports despite the requirements of Act 137 of 1996. Parents are sometimes not informed that they do not need to relinquish custody to get services nor of the implications of relinquishing custody.

6. Families with extraordinary caregiving demands due to an adult or child family member with chronic or terminal illnesses (i.e. diabetes, cancer) cannot access assistance. (The Essential Persons program in Medicaid and Alzheimer's Respite programs are exceptions, but do not cover many families in similar extraordinary caregiving circumstances.)

7. Woefully inadequate coordination between AHS programs and school evaluation/planning/services puts tremendous and duplicative process burdens on families and results in inconsistent services from individual to individual and school to school, as well as providing significant barriers to service access.

8. Transition supports for young adults are limited and vary as a function of disability, family income, annual budget constraints, and geographic area. Access to existing transition supports is compromised by a lack of integrated information and navigation services for eligibility requirements, applications processes, and the relationship between various benefits such as income maintenance, SSI, Voc Rehab, and health services (including Medicaid, MH and DS). Opportunities for transition-age youth with disabilities are significantly diminished when supports for care, employment and independence are not fully and efficiently utilized.

9. Parents with disabilities who are not eligible for Developmental Services lack support to care for their own children, with or without special needs.

10. Aging parents will be unable to assume the same level of care for adult children with disabilities. Families need a range of options for support that allow families to adjust their share of care giving according to capacity, while maintaining an active role in their child’s life. Other caregivers may experience periods of “burn out” or family crisis that temporarily compromise their ability to meet the needs of an adult with disabilities and require similar support alternatives and respite.