Description: Supporting Families with a Member with Developmental Disabilities is designed to build a statewide infrastructure for supporting individuals with developmental disabilities and their families across the lifespan.
Project Contact: Michelle Reynolds, 816.235.1759, firstname.lastname@example.org
Project Period: 2011-2014
Annual Funding: $59,000 (FY2014)
Funding Source: Department of Mental Health-Division of Developmental Disabilities
Applied Research: Supporting Families with a Member with DD is focusing its applied research efforts on areas of systems change strategies: Reframing, Service Innovation, Policy and Goals, Financing, Training and Technical Assistance, and Outcome Data.
Community Services and Supports: UMKC-IHD and DMH-DDD partner to provide overall project coordination as well as provide technical assistance to state partnerships and organizations.
Information Dissemination: Prior to the project, there had been a lot of investment in families and self-advocates. This has been an opportunity to engage with case managers to encourage life planning.
Program Need and Historical Context
Families are the core unit in our society, serving as a source of support for all their members. For individuals with intellectual and developmental disabilities, the role of family is unique, and often central in the support and care provided across the lifespan. Family members play key roles in identifying and securing opportunities for their family members to participate in meaningful ways within their community and ensuring access to self-determined lives. Parents and other family members of individuals with intellectual or developmental disabilities often provide medical, behavioral, financial, and other daily supports beyond what most families provide. Yet, the vital role of families is not fully recognized and supported in disability policy and practice.
Supporting people with intellectual and developmental disabilities to live and fully participate in their communities throughout their lives has emerged as a fundamental right and consideration in disability policy and practices. Because of the role that families continue to play in the lives of their family members with intellectual and developmental disabilities, future policies and practices must reflect the family as part of the system of support.
The service delivery system for people with disabilities has a history of discrimination and segregation, denying access to many opportunities for individuals with disabilities. Based on this historical discrimination, a change in the culture is necessary for system reform. As societal perception changes about people with disabilities, so must the systems and policies designed to support them. The main catalyst for this change is listening to the self-advocate and family voice. Secondary catalysts include leadership and the value that segregation and discrimination is no longer acceptable. These catalysts nudge the system towards change.
Key to systems reform is system efficiency. Disability service systems, through both State and Federal programs, furnish a wide array of services and supports to individuals with I/DD. These services and supports provide opportunities for individuals with I/DD to maximize their full potential and participate in their families and community. The state disability system must drive forward innovative services, such as family specific strategies and family and person driven services.
Another consideration for system reform is the fact that the new system must effectively facilitate collaboration and use of community assets. There are three strategies in family support that emphasize collaboration and use of current assets the family and community possess, these strategies are: discovery and navigation, connecting and networking, and goods and services.
Significant Project Activities and Projected Outcomes
- Demonstration state for National Community of Practice
- Implementing supports to families strategies and work plans in St. Joseph and St. Charles
- Provision of technical assistance to county boards to enhance supports for families
Faculty and staff from UMKC-IHD will partner with DMH-DDD to provide overall project coordination and technical assistance to DDD staff. The Institute provides technical assistance to develop a strategic plan that identifies and reforms policies and practices focused on increasing outcomes related to individualized supports, community living, employment and supports to families across the lifespan.
Specifically focused on families, the IHD developed a statewide family-directed Missouri Family-to-Family Resource Center more than 20 years ago, which provides information, peer support, and leadership opportunities that assist families to become more informed and empowered to support their members with disabilities. The MoF2F has expanded its efforts into each of the 12 state regional offices by developing the capacity of a Family Support Coordinator who facilitates requests from families.
- LifeCourse Book
- LifeCourse Webinars
- Regional Networks
- Tools for Replication of Enhancing Support Coordination (in development)
- State consensus on LifeCourse framework and agenda for improving support for families with members with I/DD.
- State consensus on quality of life outcomes
- Enhanced state policies, practices, and sustainable systems that result in improved supports to families.