Principles: Universal/Integrated Long-Term Services and Supports
Long-term services and supports (LTSS) refer to the daily living supports that people with disabilities and older adults need. LTSS includes home and community-based services (HCBS), which are the overwhelming preference of service delivery for the disability community and older adults. Most LTSS is funded through Medicaid, called Medi-Cal in California. LTSS includes In-Home Supportive Services (IHSS), Medicaid Home and Community Based Services Waivers (Waivers), Community Based Adult Services (CBAS), and institutional settings such as nursing facilities. These Universal/Integrated LTSS principles incorporate and complement the concepts in the following existing DRC Principles:
- Health Care and Long-Term Services and Supports (No. 1045, Amended 1/26/18)
- Community Integration (No. 1018, Amended 3/24/17)
- Public Benefits (No. 1043, Revised 9/17/16)
- Personal Assistance (No. 1007, Amended 6/21/14)
- Personal Autonomy (No. 1024, Amended 9/16/17)
- Cultural and Linguistically Competent Services (No. 1044, Amended 9/16/17)
- Disability Discrimination (No. 1008, Amended 12/15/16)
Any proposals for universal LTSS, and/or integration of LTSS financing, coordination, or delivery of LTSS must assume the following:
- Eliminate institutional bias and instead prioritize and incentivize HCBS, as required by the integration mandate of the Americans with Disabilities Act and the United States Supreme Court decision in Olmstead v. L.C.
- LTSS planning, assessments, and service delivery must be consumer-driven, promote consumer participation, and offer consumers the full range of available options in order to make informed choices. Consumers have the right to refuse treatment or services, including case/care management, and the right to due process. Shared decision-making works best when a person who needs services trusts the person or people providing services.
- Proposals for LTSS must maximize available federal financial participation, promote cost-efficiency through use of HCBS programs, and comply with federal requirements for HCBS. New proposals must not supplant existing HCBS funds, and priority for new proposals should be to ensure that limited funds serve the most people with the most need in the most cost-effective manner, while ensuring choice and independence of consumers. Existing programs with demonstrated success, such as the California Community Transitions program, should be maintained. A priority should be placed on programs to protect the income of consumers who want to move to or to live in the community (e.g., home upkeep allowance increase, extension of SSI temporary institutionalization benefits).
- LTSS must be accessible to and useable by individuals with disabilities, including physical, programmatic, and communication and informational access. All information and services, including provider sites, medical diagnostic equipment, and informing materials, must be accessible to persons with disabilities. Disabilities vary and accessibility may mean different things in different settings, but the requirements are not different. Accessibility is essential.
- LTSS must be linguistically and culturally appropriate, including offering services that meet the needs and preferences of diverse cultural communities, and offering information and communication as needed in the language of the individual’s choice.
- To the extent that managed health care organizations have responsibility for LTSS:
- Mandatory covered benefits must include the full range of HCBS LTSS, without a bias towards institutional settings in payment rates or funding structures;
- Case/care management, service coordination and benefits options must be provided through the social model, not the medical model;
- There must be safeguards in place to ensure that services are authorized based on consumer preference and need, rather than on funding limits;
- Providers must be of high quality, must be reimbursed at rates sufficient to enable provision of quality services, and must be sufficient in number and readiness to meet beneficiaries’ needs.
- Case/care management must be conflict-free, including assessments and development of care plans, and administration of LTSS programs must protect consumers’ rights, improve access to services, and promote delivery of high quality services that are aligned with consumers’ preferences. Case/care management must effectively assist consumers to coordinate resources, including public benefits, housing, medical care, employment, circles of support, etc.
- There must be standards for, and monitoring of, quality measures for LTSS that assess the impact of current programs and new, proposed, service delivery systems. New proposals must be data-driven based on needs and preferences of affected consumers.
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