Hydrocephalus Association Advocacy Position Statements
The Hydrocephalus Association’s Advocacy Program is charged with the responsibility to advocate on the behalf of the hydrocephalus community; on behalf of increased funding for research into hydrocephalus causes, treatments, and cures; and to address public policies and legislation that will impact the lives of people living with the daily challenges of hydrocephalus. On April 10, 2017, the Board of Directors approved our position statements on key legislative issues. This is how we stand.
The Hydrocephalus Association will urge legislators to preserve and/or amend healthcare policies that:
- Assure access to affordable health insurance coverage that will provide the care and services that our patients need to stay in good health through their entire lifespan, including individuals with pre-existing conditions.
- Maintain the prohibition on annual and lifetime limits on health insurance.
- Maintain out-of-pocket spending limits for patients.
- Provide affordable health coverage options that enhance the value and control the cost of health insurance and insurance premium increases.
- Enhance healthcare coverage for children with disabilities, children of low-income families, and economically disadvantaged families.
- Maintain eligibility for individuals and children to remain on their parent’s insurance until the age of 26.
The Hydrocephalus Association will urge legislators to support educational policies that:
- Increase and preserve investment in education at all levels for children and young adults with special needs, including preserving Part B of the Individuals with Disabilities Education Act (IDEA) that guarantees children with disabilities a free public education appropriate to their needs.
- Oppose any initiatives that would reduce the existing educational rights of children with special needs under such bipartisan laws as the Every Student Succeeds Act (ESSA) and the Individuals with Disabilities Education Act (IDEA).
- Preserve Early-Intervention and Head Start programs for at-risk infants and toddlers.
- Oppose any change to existing federal law or regulations that would
- permit the expenditure of federal funds in any school or educational setting which fails to comply with federal education laws regarding children with special needs, or
- reduce the availability of funds that support Free Appropriate Public Education (FAPE) and special education services and programs that comply with federal educational laws, including ESSA and IDEA.
The Hydrocephalus Association will urge legislators to preserve and protect labor policies that:
- Prohibit discrimination based on disability in the workforce, including accessibility and reasonable accommodations to employees with disabilities.
- Preserve the Workforce Innovation and Opportunity Act and Americans with Disabilities Act to protect the employment rights of people with disabilities in the workforce.
SCIENCE and RESEARCH
The Hydrocephalus Association will urge legislators to develop research policies that:
- Support increased funding for science and health research, including allocations that reflect the prevalence of hydrocephalus in the population.
- Support hydrocephalus research as a condition to be tracked under the National Neurological Diseases Surveillance System.
- Support the continued inclusion of Hydrocephalus as a condition eligible for funding through the CDMRP.
- Support increased funding for NIH, NINDS, the BRAIN Initiative, and the Precision Medicine Initiative.
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