Home and Community-Based Services Waiver: Family Quality of Life as and Outcome Measure
Heather J. Williamson, OTR/L, MBA
University of South Florida, College of Public Health, Department of Community and Family Health
Florida Center for Inclusive Communities UCEDD Trainee
BACKGROUND & SIGNIFICANCE
• Individuals with intellectual and developmental disabilities (I/DD) are experiencing longer life expectancies and families are the primary providers of care
• By 2030 the number of adults with I/DD age 60 and older is expected to double
• Home and Community-Based Services (HCBS) waiver is the primary funding source for family support
PURPOSE
METHODS
RESULTS
• To identify if any existing HCBS waiver evaluations
include family quality of life (FQOL) outcomes associated
with provision of family support services
• HCBS waiver family support
services identified
• FQOL theory reviewed and
Beach Center FQOL domains
defined
• Existing HCBS waiver
evaluations reviewed for
FQOL domains captured
Existing HCBS Evaluations
UNIFIED FQOL THEORY
Systemic
Factors
Systems
Policies
Programs
Federal
Centers for Medicare & Medicaid
Services
Agency for Healthcare Research &
Quality
Advocacy Groups
American Association of Retired
Persons
United Cerebral Palsy
Beach Center FQOL Domains
Choice & Control: Families determine services & supports
Family Involvement: Individual with I/DD not living in home
Disability-related supports: Satisfaction with services and
supports
Disability-related supports: Satisfaction with services and
supports
Family interactions: Family enjoys time together, solves
problems and accomplishes goals together
Disability-related supports: Satisfaction with services and
supports
N/A
Community connections: Family actively participating in
community
Emotional well-being: Having supports to handle daily life
stress & time to pursue other interests
Individual Member Factors
Family
Unit
Factors
Family
Quality
of Life
Se
es
ic
rv
Individual
Level
Performance
Factors
es
Practices
Su
pp
or
ts
ic
rv
Practices
Su
pp
or
ts
Se
Family Level
Performance
Factors
Family
Support
Services
Family
Centered
Approach
New Family Strengths,
Needs, and Priorities
Image recreated from: Zuna, N. , Summers, J.A. , Turnbull, A.P. , Hu, X., and Xu, S. (2011). Theorizing about family quality of life. In
R. Kobler (Ed.), Enhancing the quality of life of people with intellectual disabilities from theory to practice (241-278). USA: Springer.
Enhance
FQOL
National Core Indicators (HSRI &
NASDDD)
NCI Family Indicators Subdomains
Family Outcomes: Supports make positive difference in lives
HCBS
Waiver
State
Satisfaction: Services & supports are adequate
Access & Support Delivery: Families getting services &
Disability-related supports: Satisfaction with services and
supports needed
support
Information & Planning: Families have needed information
Disability-related supports: Satisfaction with services and
for planning
supports
FQOL domains not addressed include parenting and health/material well-being
CONCLUSION & IMPLICATIONS
• Only one voluntary state level evaluation, NCI, includes FQOL domains
• Increased reliance on family caregivers, therefore policy and programs should include
caregiver outcomes
• Limitations: Single author, no family caregiver involvement
Note: Presentation is funded by the USF COPH Student Honorary
Award for Research & Practice “SHARP” award program.
Email: hwillia1@health.usf.edu