Advisory Council July 2014 Meeting Presentation: ACL/AoA's Family Caregiver Support Programs



Monday, July 21, 2014


ACL/AoA's Family Caregiver Support Programs: An Overview

About ACL

  • The Administration for Community Living (ACL): A new operating division within the U.S. Department of Health & Human Services
  • Brings together:
    • Administration on Aging (AoA)
    • Office on Disability (OD)
    • Administration on Intellectual & Developmental Disabilities (AIDD)
  • Charged with developing policies and improving supports for seniors and persons with disabilities of all ages.

ACL's Authorizing Statutes & Programs

  • Older Americans Act of 1965 (as amended)
  • Public Health Service Act Programs
    • Section 398 -- Alzheimer's Disease Supportive Services Program (ADSSP)
    • Title XXIX -- Lifespan Respite Care Program
  • Health Insurance Portability and Accountability Act of 1996 (HIPAA) -- Health Care Fraud and Abuse Control (HCFAC) funds
    • Senior Medicare Patrol
  • Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act)
  • Help America Vote Act (HAVA)

The U.S. Administration on Aging

  • Created in 1965 -- Older Americans Act
  • Focal Point and advocate for older persons and their caregivers
  • Supports the Aging Services Network
    • 56 state and territorial Units on Aging
    • 618 Area Agencies on Aging
    • 246 Tribal and Native Organizations
    • Thousands of providers/volunteers

Aging Network: Supporting 11 Million Older Adults and Family Caregivers

  • AoA
    • 56 State Units on Aging
    • 618 Area Agencies
    • 246 Tribal organization
    • 20,000 Service Providers & 500,000 Volunteers
    • Provides Services & Supports to 1 in 5 Seniors
    • 242 million meals
    • 28 million rides
    • 29 million hours of personal care
    • 69,000 caregivers trained 855,000 assisted
    • 4 million hours of case management
    • 9,115 individuals transitioned
    • 50,270 individuals completing CDSMP

AoA/Aging Network Programs and Services

  • Older Americans Act (OAA) Programs
    • Supportive Services (Title III B) -- adult day care, information, case management, transportation
    • Nutrition Services (Title III C 1 & 2)
    • Preventive Health Services (Title III D)
    • National Family Caregiver Support Program (Title III E)
    • Elder Rights Programs -- elder abuse, ombudsman (Title VII)
    • National Demonstrations (Title IV)
    • Native American Programs (Title VI)
  • Other National Programs (non-OAA)
    • Alzheimer's Disease Supportive Services Program (Public Health Services Act)
    • Lifespan Respite Care Program (Public Health Services Act)
    • Senior Medicare Patrol (SMP)

ACL's Caregiver Support Programs

  • The National Family Caregiver Support Program (NFCSP)
    • Title III E & VI C of the Older Americans Act -- 2000
    • Family caregivers as service recipients
    • Administered through the aging network
    • States funded via formula: number of individuals age 70+
    • 2014 Appropriation: $145.5 million
    • Flexible package of high-value supportive services:
      • Information
      • Access Assistance
      • Counseling, Support Groups, Training
      • Respite
      • Supplemental Services

The NFCSP: Eligible Service Recipients

  • Family caregivers (18+) of older adults (60+)
  • Family caregivers (18+) of individuals with Alzheimer's disease/related dementia (any age)
  • Grandparents and relative caregivers (55+) of children (under age 18)
  • Grandparent and relative caregivers (55+) of adult children (18-59) with a disability

The NFCSP: Outputs and Outcomes

  • Who was served (FY 2011 Data)
    • Access Assistance -- 1.1 million contacts for family caregivers
    • Counseling/training -- 138,427 caregivers
    • Respite -- 69,000 caregivers received 6.3 million hours
  • What they said (2012 National Survey Data)
    • 90% of caregivers felt services made them better caregivers
    • 81% of family caregivers rated services as "excellent" (47%) or "very good" (34%)
    • 77% of caregivers able to provide care longer

ACL's Caregiver Support Programs

  • Alzheimer's Disease and Support Services Program (ADSSP)
    • Since 2008 -- 85 grants to states awarded
      • As of May 2014 - 41,951 people served
    • Grantees have translated 10 evidence-based caregiver interventions
    • Presently supporting 45 grants in 18 states
      • 11 states translating 8 evidence-based interventions
      • 4 states implementing innovative programs
      • 4 states doing systems integration (coupled with evidence-based interventions)
      • 5 states working on dementia capability -- No Wrong-Door/Single Point of Entry
  • The Lifespan Respite Care Program
    • Lifespan respite programs are defined as: "Coordinated systems of accessible, community-based respite care services for family caregivers of children or adults with special needs" (PL109-442 -- Lifespan Respite Care Act of 2006)
    • Annual Appropriation: approximately $2.4 million/year
    • Competitive grants to states to resolve challenges and barriers associated with respite services:
      • Multiple programs, funding streams, access points
      • Service affordability and quality
      • Confusing and restrictive eligibility criteria & narrow targeting
      • Lack of providers, training and service gaps

Lifespan Respite States (as of 2013)

Looking Ahead at Family Caregiver Support

  • Increasing focus on complex care and medical tasks
  • Focus on the development of natural and peer supports
  • Greater use of evidence-based approaches
  • Replication and translation of evidence-based interventions
  • Caregiver assessment
  • The role of family caregivers in care transitions
  • The use of technology to reduce caregiver burden and stress

Contact me

Greg Link, MA
Aging Services Program Specialist
Administration for Community Living
U.S. Administration on Aging
Washington, DC

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