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Center for Disabilities Studies: Health and Wellness Unit

Health and Wellness Initiatives

The Health and Wellness unit includes all health-related initiatives, allowing for optimal coordination of the Center’s activities in this area. This unit houses Healthy Delawareans with Disabilities (HDWD), Emergency Preparedness for Individuals with Disabilities (EPID), Family SHADE, health care transition initiatives and other health-related projects.

 

Healthy Delawareans with Disabilities

Through funding from the Centers for Disease Control and Prevention, HDWD develops and implements various health initiatives and health promotion activities in collaboration with state and community partners; analyzes data related to health and disabilities; raises awareness about health and wellness issues encountered by individuals with disabilities; works to improve access to and inclusion in health care and wellness activities; and provides technical assistance to state and community agencies about health and disability-related issues. For more information, contact Eileen Sparling: 302-831-8802 or sparling@udel.edu.

 

GoHDWD.org

GoHDWD.org  offers information about being healthy. It is a resource for individuals with disabilities, their family members, health care professionals and providers who work with individuals with disabilities in Delaware. Topics include physical activity and recreation, emotional health, emergency preparedness and health care transition planning. An e-newsletter provides updates on health news, events and resources. Sign up for the HDWD e-newsletter.

 

Emergency Preparedness for Individuals with Disabilities (EPID)

The EPID initiative focuses on expanding family-centered and inclusive emergency planning and preparedness in Delaware. The emphasis is on family involvement, preparedness of individuals with disabilities and training for emergency planners and responders.  Activities center around enabling individuals with developmental disabilities and their families to prepare for emergency situations and promoting the seamless integration of emergency planning for individuals with developmental disabilities into existing emergency operational plans in Delaware. EPID staff members offer personal assistance in the preparation of individualized emergency preparedness plans and “go kits.” For more information, contact Phyllis Guinivan at 302-831-7464 or pguiniva@udel.edu.

 

Family SHADE  (Family Support and Healthcare Alliance Delaware)

Family SHADE is an alliance of 40+ organizations and agencies committed to working together to improve the quality of life of children and youth with special health care needs (CYSHCN) by improving access to information and services in Delaware.   Family SHADE was formed in response to a needs assessment of families and service providers conducted by Delaware’s Maternal Child Health Bureau. The results of the needs assessment indicated the need to strengthen, expand, and coordinate a system of family supports that are easily accessible, avoid duplication, use resources efficiently and prevent gaps in services to families of CYSHCN throughout Delaware.  To address these recommendations, organizations, agencies and family members came together to form Family SHADE, an “umbrella” organization that is specifically dedicated to sharing information, resources and expertise to benefit and support families of CYSHCN.  The Center for Disabilities Studies at the University of Delaware serves as the administrative home, fiduciary agent and convening agency for Family SHADE.

Family SHADE's website, www.familyshade.org, provides important information in a single place for families of children with disabilities and chronic health conditions. It includes information on events and workshops across the state, as well as a searchable database of resources.

Families can also call Family SHADE’s new hotline, 1-855-755-SHADE (1-855-755-7423) to receive help navigating the website, as well as to receive help searching the database or connecting with services. The hotline is staffed by parents of children with disabilities and chronic health conditions.

For more information, contact Phyllis Guinivan at 302-831-7464 or pguiniva@udel.edu.

 

Healthcare Transition Initiatives (HCTI)

Over the past few years, CDS has successfully worked on a number of efforts that address the challenging transition process of youth and young adults with disabilities and their families from the pediatric to the adult health care system. CDS conducted a survey on the transition experiences of young adults from Nemours/Alfred I. duPont Hospital for Children (AIDHC) to the community-based adult health care system; developed a transition website; conducted transition workshops; and served as the community voice on AIDHC’s and Christiana Hospital’s transition committees.

CDS currently is involved in reorganizing the transition website; developing a database of healthcare providers who provide accessible services for individuals with disabilities; conducting health care transition workshops for youth and young adults and their family members; and evaluating the Transition Clinic that will be operating through Christiana Care Health Services, Inc. Funding for these initiatives is provided by a variety of sources, including the Delaware Division of Public Health, Developmental Disabilities Council, and Christiana Care Health Services, Inc. For more information, contact Eileen Sparling: 302-831-8802 or sparling@udel.edu.

 

Statewide Planning for Autism Spectrum Disorders

 

CDS provides leadership on a two-year planning grant to support the development of a comprehensive state plan to improve services for children and adults with an autism spectrum disorder (ASD).  Funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, the activities to date have focused on gathering information from families and self-advocates and bringing statewide stakeholders together to develop a plan for services for individuals with ASD across the lifespan. The strategic plan is in the process of being completed (Spring 3013).

Report on focus group sessions

Report on the needs assessment

Blueprint for Collective Action: Delaware Strategic Plan to Improve Services and Supports for Individuals with Autism Spectrum Disorcer

The final long-term outcome of the strategic plan is to assure that all Delawareans with ASD have the opportunity to develop the skills and knowledge necessary to live independent and interdependent lives within the community.  For more information, contact Annalisa Ekbladh at 302-831-0626 or annalisa@udel.edu.

 

Accessible and Inclusive Health Care Providers

For the last few years, CDS has worked on addressing the need for accessible and inclusive health care settings through awareness raising activities, information sharing and assessments of health care facilities. One example of a successful accessibility initiative is the Delaware Mammography Accessibility Project (DMAP), which was carried out in partnership with the Delaware Breast Cancer Coalition and supported by funding from the Avon Foundation. DMAP staff surveyed most of the existing mammography facilities in Delaware to assess their accessibility. To assist women with disabilities in locating a facility that best meets their needs, a directory of accessible facilities is available on the Delaware Breast Cancer Coalition website.

For more information on accessible and inclusive healthcare initiatives, contact Eileen Sparling at 302-831-8802 or sparling@udel.edu.

First State Equal Access to Safety Initiative

In October 2010, the Center for Disabilities Studies entered into a three-year partnership with the Delawar Coalition Against Domestic Violence (DCADV) and the National Alliance for Mental Illness in DE (NAMI/DE) to implement an innovate program with funding from the Department of Justice/Office on Violence Against Women (OVW). This Disability & Violence Grant Program is a direct result of the reauthorization of the Violence Against Women Act in 2005 which included addressing the needs of women with disabilities who experience domestic violence. The overall goal of the program is to provide funding to multi-disciplinary State and local teams to create sustainable, systemic change that will result in effective services for individuals with disabilities who are victims of crimes such as sexual assault, domestic violence and stalking.  CDS is proud to partner with DCADV and NAMI/DE to develop a plan to address how service systems in Delaware can best serve women with disabilities or mental illness who experience domestic violence.

For more information on this project, contact Jane Donovan at 302-831-4612 or janedono@udel.edu.

 

For further information about the health and wellness unit, contact:

Eileen Sparling
302-831-8802
sparling@udel.edu