The demand for community-based long-term support and services (LTSS) continues to be a critical issue in the 21st century. However, the nation has lacked a comprehensive, proactive, national public-private system of delivery. The current system is a patchwork of inadequate funding, with the largest source of federal funds provided by the Medicaid program which requires most people to be impoverished to receive services. Furthermore, there is an institutional bias in Medicaid that directs these funds to institutional services while community services are primarily available through waivers. With increased numbers of baby boomers retiring, the need for qualified support workers and family caregivers will exacerbate severe inequities in the ability of individuals with disabilities of all ages to live in integrated settings of their choice. 

In order to meet this national challenge, the federal government must take the lead in developing a system that reflects sustainability, financial stability, diverse options of community supports and services, and a quality well-paid workforce that supports consumer self-determination and personal responsibility. Since Medicaid has become the core of federally supported LTSS, the philosophy of the Medicaid program must be changed to reflect the preference for individualized community-based services over institutional services. In addition, the need for supports outside of the Medicaid program must be addressed, including possibilities of incorporating an LTSS benefit into Medicare.  

Community-Based Long Term Supports and Services Priorities for the 118th Congress
  • Expand, modernize, and, where appropriate, maintain national policies that provide individualized supports. Such supports should encourage individual control of services, self-sufficiency, and personal responsibility among our constituents. Such a system should avoid the need for people to impoverish themselves to qualify for services. Supports and services must be:
    • Person-centered and self-directed;
    • Inclusive of personal assistance services and technology appropriate for each individual;
    • Designed and implemented to meet individual needs;
    • Widely accessible; and
    • Provided in the community in inclusive and integrated settings;
  • Advocate for a quality, well compensated and sustainable workforce to ensure that community LTSS can be fulfilled;
  • Promote development of legislation consistent with the goals of inclusive participation, self-direction, self-determination, personal responsibility, community integration, and independence including reversing the institutional bias in Medicaid, so that community living is the first and preferred option;
  • ​​Ensure adequate funds for federal monitoring, enforcement, and implementation of the U.S. Supreme Court’s Olmsteaddecision and the Home and Community Based Services (HCBS) Settings Rule;​​​ 
  • Ensure adequate data collection and analysis of the use of HCBS by people of color with disabilities and other marginalized groups, allowing for reforms to take into accountthe specific needs and barriers faced by these populations;​ 
  • Provide incentives to community-basedorganizations to utilize innovative technologies to enhance delivery of supports and services, such as home monitoring and communications technologies, with appropriate privacy and ethical safeguards; 
  • Amend federal law to allow federal employeeand ERISA ​pension and survivor benefits to be paid to a trust established for an individual with a disability to allow for the long-term support of the individual;  
  • Ensure that military pensions and survivorsbenefits may be placed in a trust or otherwise allow for these benefits to be used ​for the long term support of individuals with disabilities​; and 
  • ​​Ensure federal oversight and technical assistance​​​to support states in achieving compliance with and investment of resources to enforce the HCBS settings regulation for people to live more independent lives, especially in regard to community integrated employment, community supported living, use of remote support technology, increased access to non-driver transportation options.