Promoting Systemic Development of State Family Caregiver Support Programs

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Promoting Systemic Development of State Family
Caregiver Support Programs

• National Association of State Units on Aging
  Project of National Significance
• March 22-25, 2004
• Supported by the U.S. Administration on Aging

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Promoting Systemic Development of State Family
Caregiver Support ProgramsNASUAs Project of
National SignificancePowerpoint
PresentationFebruary 2004

• This report was supported, in part, by Grant No.
  90-CG-2524, from the U.S. Administration on
  Aging, Department of Health and Human Services.
  Grantees undertaking projects under government
  sponsorship are encouraged to express freely
  their findings and conclusions. Points of view
  or opinions do not, therefore, necessarily
  represent official Administration on Aging policy.

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Table of Contents

• National Family Caregiver Support Program
  Overview, p. 4
• The NASUA Project, p. 12
• The Service Package, p. 19
• Coordination, p. 22
• State Profiles , p. 25
• Supporting Caregivers of Elders with Visual
  Impairments, p. 36

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The National Family CaregiverSupport
ProgramOverview
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Factors Leading to the Creation of the NFCSP

• Increased desire for home care
• Supreme Court Olmstead Decision
• Pivotal role caregivers play in home and
  community based care
• Interest in focusing particular attention on the
  needs of caregivers

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NFCSP OverviewStructure

• Administered by AoA
• Funded at 141 million dollars
• Operated at the state and local levels
• Funds administered by formula with matching state
  funds
• Special projects of national significance and to
  encourage innovation

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NFCSP OverviewAoA Activities and Supports

• National Promotion
• Interactive Website
• Research Materials

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NFCSP OverviewKey Features

• Emphasis on the caregiver
• Multi-faceted system of supports
• Five core services
• Two population groups

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NFCSP OverviewOlder Americans Act Requirements

• The Service Package
• Information
• Assistance
• Counseling, Support Groups, Training
• Respite Care
• Supplemental Services

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NFCSP OverviewOlder Americans Act Requirements

• Target Population
• Family Caregivers of Older Individuals (60)
• Grandparents or other older relative caregivers
  (60) of children (lt18)

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NFCSP OverviewOlder Americans Act Requirements

• Coordination
• Each AAA is responsible for coordinating the FCSP
  activities of the agency.
• Coordination will occur with the AAA and other
  community agencies and voluntary organizations.

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The National Family CaregiverSupport Program
The NASUA Project
13
The NASUA Project

• Funded by AoA as a project of National
  Significance
• Designed to assist states and the broader aging
  and human service networks in the systemic
  development of FCSPs.

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The NASUA ProjectActivities

• A deliberate, step by step process that includes
• Convening advisory committee
• Synthesising relevant research
• Deliberations of Expert Panels
• Developing systems development guides
• Collecting information from state experiences
• Peer exchange among states on selected topics

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The NASUA ProjectProducts

• Systems Development Guides
• Critical Questions, Design Approaches, Optional
  Implementation Strategies
• Executive Summaries
• PowerPoint Presentations
• Research Briefs
• State Experience Reports

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The NASUA ProjectGoals

• Generate new knowledge to support SUAs in their
  leadership role of developing statewide caregiver
  programs
• Foster application of the new knowledge by AAAs
  and local providers

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The NASUA ProjectOutcomes

• FCSPs that adopt a systemic approach will be
• Integrated to ensure that supports are recognized
  and considered within the broader HCBS system.
• Easily accessible to all caregivers and care
  recipients
• Flexible enough to respond to varied individual
  and community needs
• Consumer directed to maximize caregiver control
• Culturally competent to ensure appropriate
  responses to the needs and preferences of diverse
  racial, ethnic, cultural and language differences
  of caregivers.

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The NASUA ProjectOutcomes

• The Bottom Line Outcome
• To help family caregivers experience a seamless
  process for getting connected to information and
  services.

19
The Service Package

• The Older Americans Act outlines the array of
  caregiver support services in a service package.
• There is a clear expectation that the FCSP will
  do more than simply provide respite care.
• The package of services are intended to enhance
  and extend caregiving

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The NASUA Project OffersCritical Questions for
the Service Package

• How easy is it for caregivers and care recipients
  to access needed information, assistance,
  services and supports?
• How effective is the FCSP in reaching underserved
  populations?
• How are the needs and preferences of caregivers
  identified?
• How will the individual caregivers need for
  support be determined?

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The NASUA Project OffersCritical Questions for
the Service Package

• Are FCSP services responsive to the diverse and
  changing needs of caregivers?
• Are FCSP services provided in a culturally
  appropriate manner?
• Are caregivers support needs recognized and
  addressed by HCBS programs?
• How are FCSP services coordinated with other
  caregiver support and HCBS programs?

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Coordination

• Service Continuity is characterized by easy
  access to information and assistance regarding
  the range of long term care options and service
  plans that respond to the needs of caregivers and
  care recipients.
• System Integration streamlines access and service
  provision and ensures that the broader long term
  care system, in partnership with the FCSP,
  responds to the needs of the whole family.

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The NASUA Project OffersCritical Questions for
Coordination

• What steps has the aging network taken to assure
  easy access to caregiver support services?
• What steps has the aging network taken to assure
  service continuity for caregivers?
• What partnerships has the FCSP developed?

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The NASUA Project OffersCritical Questions for
Coordination

• What is the SUA doing to support coordination and
  facilitate the development of partnerships in all
  parts of the state with other caregiver support
  programs, HCBS and non-traditional organizations?
• What is the aging network doing to ensure that
  caregivers needs and contributions currently are
  considered in Olmstead/Systems Change activities
  in the state?

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The NASUA ProjectState Profiles

• States selected by NASUAs FCSP project Expert
  Panel.
• Focus on three areas.

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The NASUA Project SummarizesState Profiles to
Address How Each State

• Coordinates the NFCSP with other state programs
  including state-funded respite and HCBS,
  Alzheimers and Waiver programs.
• Assures caregivers access to information,
  services and supports
• Conducts outreach to underserved populations.

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Georgia

• A single entry point and common intake form
  allows for referrals between programs.
• AAA staff use an electronic database to assess
  callers needs and determine which programs are
  most appropriate.
• Developed outreach material in Spanish.

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Massachusetts

• Consumers call 1-800-AGE-INFO for assessment and
  service coordination.
• Aging Service Access Points (ASAPs) and Area
  Agencies on Aging (AAAs) deliver services in each
  community.
• Focus groups identified outreach needs for
  underserved populations (non-English speaking,
  grandparents raising grandchildren, gay/lesbian
  caregivers, etc.)

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Minnesota

• Consumers and caregivers can go to any access
  point to gain entry into the system of HCBS and
  caregiver supports.
• Outreach to specific immigrant and minority
  populations (e.g., Latino, Southeast Asian,
  American Indian elders are focus of the FCSP).

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New Jersey

• Area Agencies on Aging are required to coordinate
  the statewide respite program with the NFCSP.
• Entry into HCBS is through one of the 21 NJ Ease
  sites located in county-based AAAs.
• AoA Innovative Caregiver Grant to develop a
  culturally/linguistically competent system (e.g.,
  FCSP materials translated, training curriculum,
  web site).

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Ohio

• The FCSP is being coordinated with other HCBS in
  Ohio including Medicaid Waiver (PASSPORT) and the
  Alzheimer's Respite Program.
• Access to the NFCSP is either through a AAA or a
  service provider.
• Some AAAs have structured culturally relevant
  caregiver training and information.

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Oregon

• The FCSP is integrated with other programs
  serving seniors.
• AAAs are the access points for the full array of
  services.
• Special focus on outreach to Native Americans as
  the result of partnerships with providers that
  serve older Native Americans and the AAAs.

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Pennsylvania

• Is integrating the FCSP with state-supported
  caregiver program.
• The states 52 AAAs are the intake points for the
  FCSP.
• AoA Innovative Grants focuses on caregivers over
  60 caring for relatives aged 19 to 59.

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Washington State

• Integrating the FCSP with the states Respite
  Care Program and the state FCSP.
• AAAs serve as the access point for caregiver
  information, assistance and services.
• Providing one-year grants to pilot projects
  designed to reach out to underserved groups
  (geographically isolated, rural areas, ethnic
  communities and ethnic/kinship caregivers.

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Wisconsin

• Consumers and caregivers contact their local
  county office on aging Aging Resource Center to
  gain access to an array of HCBS and caregiver
  supports.
• The NFCSP has provided additional funds for
  outreach to underserved populations and for the
  development of information materials.

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Supporting Caregiversof Elders with Visual
Impairments
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The Challenge

• Approximately 3 million older persons currently
  experience some level of visual impairment.
• Approximately 6 million by 2030.

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The Impact

• Fear
• Denial
• Withdrawal
• Mental Health

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Caregiver Ramifications

• Failure to recognize the symptoms
• Overcompensation
• Resentment

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Goals of the Monograph

• Assist SUAs, AAAs, and the other providers to
  identify and understand the issues in serving
  this group.
• A tool for program evaluation.
• Provide suggestions for designing NFCSPs that are
  sensitive to these issues.

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Connecting Two Networks

• The Older Blind Independent Living Programs
• Family Caregiver Support Programs

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Collaboration Experts in the Field of Vision
Loss

• CDC, National Center on Birth Defects and
  Developmental Disabilities
• National Eye Institute
• Rehabilitative Services Administration
• American Foundation for the Blind
• Lighthouse for the Blind

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Key Recommendations

• Increase knowledge and make connections between
  the FCSP and Older Blind Independent Living
  Programs.
• Make connections with the medical community.
• Ensure that caregivers of consumers with visual
  impairments receive the supports they need.