Policy, Principles and Positions

UCP’s policy agenda covers five domains – dignity; independence and community-inclusion; access to support and enabling services; support for disability service providers; and innovation in supports and technology to enhance life for individuals with disabilities and their families. Those domains include the following positions:

Recognize the dignity of individuals who have cerebral palsy and other disabilities and the challenges they and their families face and offer opportunities for them to broadly share their voice and perspectives on public policy.

Policies in this area include those that:

  • Protect the civil rights of individuals with disabilities;
  • Include considerations of the experience of individuals with cerebral palsy and other disabilities in economic and tax policies, community development, access to the built environment, disaster planning, criminal justice initiatives and immigration policy; and
  • Promote education and awareness about the experience of individuals with disabilities broadly.

Promote policies that advance independence and inclusion for people who have cerebral palsy and other disabilities.

Policies in this area include those that:

  • Expand independent living options (for example, through Administration for Community Living programs) and promote the use of assistive technologies;
  • Increase options for affordable and accessible housing, including through programs aimed at individuals and home builders, set-asides for accessible apartments, and home modifications targeted to needs of people with disabilities;
  • Promote development of expanded transportation/mobility services (for example, semiautomated cars) tailored to individuals with disabilities and enhancement and support for current programs (such as through the Medicaid transportation benefit);
  • Support programs that train and create opportunities for individuals with disabilities to work or volunteer, part-time, or full-time basis; allow for a range of options tailored to the needs of individuals with disabilities, including competitive employment in integrated settings; ensure sustainability of vocational rehabilitation programs; and
  • Broaden education opportunities and access to educational programs for individuals with cerebral policy and other disabilities, including through support for resources to allow students to pursue higher education opportunities; ensure alignment of special education and general education laws, promote implementation of IDEA/ESEA, and fund early intervention services.

Ensure people with disabilities and their families have access to appropriate and high-quality services, supports and care.

Policies in this area include those that:

  • Enhance access to basic health care services for individuals with cerebral palsy and other disabilities, including therapies, preventive care and specialty referrals, and support policies that expand health care coverage in the disabled community, including by protecting core provisions of the Affordable Care Act;
  • Protect patient and provider choice in ability to access specialty care, whereby there may be very limited numbers of providers with expertise on particular conditions and treatments, and ensure access to needed specialty care is not eroded by exclusionary hospital or provider networks;
  • Strengthen and preserve the Medicaid program and ensure it is sustainable for the future with appropriate funding levels and structure for payment that reflects the underlying costs and future care needs of the population with disabilities;
  • Support access to important Medicaid and state-funded services, including home-and community based services, foster programs, adult day programs, and behavioral health services;
  • Advance sustainable and effective early childhood intervention therapies and programs;
  • Ensure Medicaid managed care programs providing LTSS services include community based organizations serving the disability community in their networks and advocate for improvements to the Medicaid managed care regulation;
  • Support non-emergency medical transportation and its role in ensuring individuals receive access to needed health care services;
  • Enable greater use of caregiver and respite services and programs; and
  • Encourage development of quality metrics for Medicaid LTSS programs and for Medicare and commercial health plans that align with best practices in the care of people with disabilities.

Encourage innovation – research and development of new technologies and supports to enhance life for people with cerebral palsy and other disabilities and their families.

Policies in this area include those that:

  • Invest in clinical and economic research specific to individuals with cerebral palsy and other disabilities;
  • Spur development of new technologies and supports that improve the lives of individuals with disabilities (such as through virtual reality, social networking, and artificial intelligence);
  • Support public health initiatives that make it easier for individuals with disabilities and families to prevent and manage chronic health conditions and other health care needs;
  • Expand research and pilot programs that seek new approaches to assist individuals with disabilities lead healthier lives; and
  • Support community-based organizations that provide those services and supports and lead innovation for the disability community.

Support community-based organizations serving those with disabilities and their families with resources and flexibility to provide quality services.

Policies in this area include those that:

  • Recognize and promote the value of disability service providers in the overall system of care for individuals with disabilities, including through support for policies that impact charitable giving;
  • Advance workforce policies and regulations that make it easier for disability service providers to staff their programs, address shortages and compete with health care systems for personnel, scale appropriately to changes in client needs, retain high quality staff, and incentivize performance. As minimum wage and other regulations and laws governing pay may prove barriers for disability service providers to achieve those goals, consideration should be given to alternate approaches that recognize the exceptional role these organizations play in the community;
  • Provide appropriate reimbursement for services and programs, particularly through the Medicaid program, to providers of services for individuals with disabilities to ensure easy and convenient access to essential, high-quality and vital community-based services;
  • Encourage expansion of reimbursement and tax credits for long-term service and support services, rehabilitation technologies, and health insurance coverage for individuals with disabilities; and
  • Support programs that help community-based organizations serving this population share best practices, invest in new services, and participate in public and private health care initiatives (for example care models that include disability service providers in health care networks).