Alisha Raiford-Hall and Tom Kelly of Delaware’s Division of Developmental Disabilities Services (DDDS) have been hard at work. Thanks to a grant from the CDC in 2005, the division has been able to start incorporating the needs of Delawareans with disabilities into its overall Healthy People 2010 programs.
As part of that effort, the Healthy Delawareans with Disabilities 2010 Project has been:
- Assessing the primary indicators and secondary conditions that have the largest health and life satisfaction effects on people with disabilities
- Developing a broad-based, consumer-oriented advisory panel that includes people with disabilities and the organizations that work most closely with them
- Producing targeted health promotion materials for dissemination within an integrated public health and disability-sensitive infrastructure
All three efforts are part of Delaware’s overarching goal, which is to build an infrastructure capable of supporting broad-based, in-house programs to improve the lives of people with disabilities and their families.
The advisory panel is the engine driving HDWD programs. The panel is made up mostly of people with disabilities and their families, representatives of advocacy organizations, and representatives from various health and social services organizations.
Although there are many effective disability-focused organizations in Delaware, their focus tends to be on their own agendas, goals and efforts. The HDWD 2010 advisory panel applies a global perspective to disability issues in Delaware, identifying shared issues and goals, and bringing different groups together. The panel meets every other month to discuss the health and wellness supports that are needed and develops plans to address those needs when possible. Creating alliances and networks can accomplish more with fewer resources, and establishes core supports that benefit everyone.
Adult and Child Surveys
To increase Delaware’s epidemiological capacity, the DDDS has adapted the Behavioral Risk Factor Surveillance Survey (BRFSS) survey for both adults and children with disabilities. The adaptations add questions about disability issues, such as care-giving and accessibility.
The adult’s survey is complete, but the children’s survey is still ongoing. The surveys try to identify which medical, social, emotional, family, or community secondary conditions are most critical to the overall health and life satisfaction of people with disabilities. The children’s survey was coordinated with other programs that focus on the health and development of children with disabilities: the interagency Child Development Watch Program, the State Council for Children with Special Needs, the Parent Information Center of Delaware, the Delaware Autism Society and the Department of Education.
One of the advisory panel’s first projects was to compare survey results from the regularBRFSS with those from Delaware’s BRFSS. To identify the disabilities most commonly experienced by adult Delawareans, the 2005 Delaware BRFSS asked respondents whose activities were limited by a physical, mental or emotional disability to identify their primary impairment or health condition. The retrospective analysis of four years of data uncovered significant differences between Delaware’s survey and the BRFSS. “It suggests that the BRFSStends to under-represent people with cognitive, intellectual and sensory disabilities in Delaware,” said Kelly.
Health Promotion Pilot Projects
Delaware’s projects focus on four primary populations: people with physical disabilities, people with sensory impairments, people with cognitive impairment, which includes mental illness, and children with special health care needs. The DDDS is developing pilot modules appropriate for each community.
The recently completed Yes You Can is an eight-week exercise and yoga program modified for people who face challenges with mobility and need to exercise from a seated position. The program encourages participation in an exercise program, while addressing the barriers that often prevent people with physical disabilities from exercising.
The HDWD 2010 also recently completed a six-week, smoking-cessation adult education course for adults with intellectual disabilities, which was added to an existing schedule of courses. Participants met weekly for two hours: one hour of educational time followed by socialization and discussion. Early feedback suggests that the program inspired many participants to try to stop smoking, and that traditional programs may not offer the support that this community needs.
A third pilot project works with a local amputee support group. The project focuses on training peer visitors and helping individuals with limb loss live comfortably in the community. The two-hour sessions for individuals address depression, medical management and available local resources. The sessions provide general information, so families and individuals with limb loss know what to expect and where to go for help. The Amputee Coalition of America coordinates the peer visitor training.
The fourth project, Delaware First Signs, is a collaborative statewide effort led by the Autism Society of Delaware, Delaware Department of Health and Social Services, Delaware Developmental Disabilities Council, University of Pennsylvania School of Medicine and First Signs, Inc. The Delaware First Signs program offers professional training, parent outreach and public education. The program tries to:
• Increase knowledge of early warning signs among pediatric practitioners in Delaware to raise their level of awareness
• Improve frequency and quality of screening young children
• Facilitate timely referral of children in Delaware to local early intervention programs
• Lower the age at which children are identified with autism and other developmental disorders in Delaware
A team of early-intervention specialists and parents visit doctors’ offices, nursing schools, parent groups and residency programs to spread the word. The HDWD hopes to extend the project audience to educators and childcare centers, according to Kelly.
Raiford-Hall said, “I’m quite proud that we were able to pull these projects off. We’re confident now that we have sufficient support and structure in place to develop more extensive health promotion and wellness programs.”
Broadening the Disability Perspective
Another strong current running through all these efforts has been to introduce a disability perspective into existing health efforts by infiltrating committees and subcommittees tasked with improving health. “The goal has been to get people to embrace the concept of health and wellness promotion for people living with disabilities,” said Raiford-Hall.
“Wherever we can publicize the importance of health and wellness promotion for people with disabilities, we’re doing so,” said Raiford-Hall. “And we are very appreciative of the guidance and support we have received from AAHD, New York State and the CDC team,” she concluded.