Key Topics Related to Developing Policy-oriented Research to Benefit People Living with Burn Injury
Last Updated: 2/18/2021
This resource was developed to help researchers conduct policy-focused research to support people with burn injuries. It outlines key policy priorities related to people living with burn injuries and provides links to organizations advocating for these priorities. Individuals with burn injuries often face many challenges due to their injury, especially when it comes to accessing healthcare, finding employment and living independently. To help individuals with burn injuries access opportunities in these areas and foster their independence, it is important for burn researchers to identify and develop research to support these priorities. Another way to advocate for these issues is to be in conversation with organizations that support funding for state and federal programs that help people with disabilities in general, including burn, to address related challenges, and research about burn specifically. Some of these organizations focus on preventing burn injury. Others promote cross-disability rights in ways that can benefit people with burn. The organizations outlined in this resource may also be viewed as potential research partners that researchers can engage to make policy research more relevant to stakeholders.
Key policy issue 1: Access to affordable healthcare
Individuals with burn injury often lack access to high-quality affordable healthcare and face barriers to accessing rehabilitation services. The following policy issues address access to affordable and inclusive healthcare services.
- Maintain and expand access to health care and long-term recovery care.
- Improved medical insurance coverage for patient-centered access to rehabilitation
Key policy issue 2: Employment and Independent Living
Individuals with Burn Injury face many challenges to find gainful employment, live independently, and gain a better life experience. The following policy issues address employment and improved independent living
- Increased access to competitive integrated employment
- National Disability Rights Network (NDRN)
- American Association of People with Disabilities (AAPD)
- APSE 1
- National Council on Independent Living (NCIL)
- Disability Rights California (DRC)
- Increased access to affordable housing
- American Association of People with Disabilities (AAPD)
- Center for Disability Rights
- Disability Rights California (DRC)
- National Council on Independent Living (NCIL)
- Increased access to public assistance and safety net programs
- Expanded coverage for long-term services and supports
Key policy issue 3: Burn Prevention
Prevention efforts are a key factor in helping reduce the risk of burn injury. The following policy issues address prevention.
- National Fire Protection Association (NFPA)
- International Fire Chiefs Association (IFCA)
- Congressional Fire Services Institute
Key policy issue 4: Disability rights
To achieve independence, individuals with Burn Injury need laws such as the Americans with Disabilities Act and other similar laws that protect against discrimination to be continually applied and advanced.
- Safeguard laws that protect against discrimination for individuals with Burn Injury
- National Council on Independent Living (NCIL)
- Phoenix Society For Burn Survivors
- Face Equality International
- American Association of People with Disabilities (AAPD)
Key policy issue 5: Funding for Burn Injury Research
Funding for Burn Injury research is essential for advancing treatment practices that improve the health and wellness of individuals with Burn Injury.
- Expand research to promote best practices regarding Burn Injury treatment, care, rehabilitation, and prevention education.
Disclaimer
The contents of this policy brief were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0082). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this brief do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.