ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Monday, January 26, 2015
Long Term Services and Supports (LTSS) Committee Recommendations
- Dementia-Capable LTSS
- LTSS Research and Evaluation
- Caregiver Support
- Funding for LTSS
1. Dementia-Capable LTSS
- The Department of Health and Humans Services (HHS) should support state initiatives to provide robust, dementia capable LTSS systems through:
- Providing coordinated Alzheimer’s disease related activities across state agencies through an identified state lead entity with adequate funding from Congress
- Supporting Alzheimer’s Advisory Council partnerships with national partners to engage state governments in LTSS efforts
- Partnering with state lead entities to assure full access to LTSS for populations at high-risk for Alzheimer’s disease
2. LTSS Research and Evaluation
- HHS should encourage federal agencies to include research on LTSS that addresses dementia capability in their research agendas. Topics needing further research include:
- Interventions that are: Culturally appropriate, for persons in the early stages of dementia, for persons with Down syndrome and other intellectual disabilities, and for persons in the end stages of dementia.
- Impact of caregiving on health and quality of life of caregivers.
- Adequate training for paraprofessional caregivers in every venue to address cultural and dementia competence.
- CMS should redesign Medicare coverage and health care providers’ reimbursement to encourage diagnosis, support care planning, and active referral to LTSS:
- Include care planning with a family caregiver in Medicare coverage even if the individual with Alzheimer’s disease is not present
- Incorporate recommendations for palliative care into CMS surveillance and quality improvement systems
- Provide reimbursement for providers to discuss palliative care early in the disease process
- The Office of Civil Rights, Health Resources and Services Administration and CMS should clarify and disseminate information to providers about the procedures under HIPAA with regard to sharing medical information with caregivers related to cognitive impairment, prognosis, and care planning in FFY 2015. This information should clarify that health professionals may evaluate decision-making capacity and that when patients lack decisional capacity, professionals may share appropriate information in the patient’s best interest with caregivers. This guidance will be useful to professionals dealing with patients with any of the wide variety of diseases that may lead to a lack of decision-making capabilities.
4. Caregiver Support
- HHS, state lead entities, and providers should assure that caregiver behavioral health risk is assessed and addressed regularly through:
- Engaging individuals and families in advance care planning (health, legal, estate, and financial).
- Assuring that health and related systems funded with federal resources improve chronic disease treatment and related services for people with Alzheimer's disease as well as family caregivers.
5. Funding for LTSS
- Congress should assure adequate funding for the following:
- Activities listed in the Public Health Roadmap, the Alzheimer’s Disease Supportive Services Program (ADSSP) and the National Family Caregiver Support Program.
- The Older Americans Act Title III to expand services to people with younger-onset dementia.
- The cost of federal support for state lead entities is estimated at $80 million. Cost of other recommendations should be calculated by public and private entities with resources to establish estimates.
- An HHS panel to recommend innovative means of financing LTSS.