Home and Community-Based Services Waiver: Family Quality of Life as and Outcome Measure
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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 • To identify if any existing HCBS waiver evaluations include family quality of life (FQOL) outcomes associated with provision of family support services UNIFIED FQOL THEORY METHODS • HCBS waiver family support services identified • FQOL theory reviewed and Beach Center FQOL domains defined • Existing HCBS waiver evaluations reviewed for FQOL domains captured 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. RESULTS Existing HCBS Evaluations NCI Family Indicators Subdomains Beach Center FQOL Domains Choice & Control: Families determine services & supports Disability-related supports: Satisfaction with services and supports Family Outcomes: Supports make positive difference in lives Disability-related supports: Satisfaction with services and supports Family interactions: Family enjoys time together, solves problems and accomplishes goals together Satisfaction: Services & supports are adequate Disability-related supports: Satisfaction with services and supports Family Involvement: Individual with I/DD not living in home N/A Community connections: Family actively participating in community Emotional well-being: Having supports to handle daily life stress & time to pursue other interests Access & Support Delivery: Families getting services & supports needed Disability-related supports: Satisfaction with services and support Information & Planning: Families have Disability-related supports: Satisfaction 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 Federal Centers for Medicare & Medicaid Services Agency for Healthcare Research & Quality Advocacy Groups American Association of Retired Persons United Cerebral Palsy State National Core Indicators (HSRI & NASDDD) Note: Presentation is funded by the USF COPH Student Honorary Award for Research & Practice “SHARP” award program. Email: [email protected] H CBS W aiver Family Support Services Family Centered Approach Enhance FQOL
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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. - PowerPoint PPT Presentation
Transcript of Home and Community-Based Services Waiver: Family Quality of Life as and Outcome Measure
Home and Community-Based Services Waiver: Family Quality of Life as and Outcome MeasureHeather J. Williamson, OTR/L, MBA
University of South Florida, College of Public Health, Department of Community and Family HealthFlorida 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• To identify if any existing HCBS waiver evaluations
include family quality of life (FQOL) outcomes associated with provision of family support services
UNIFIED FQOL THEORY
METHODS• HCBS waiver family support
services identified• FQOL theory reviewed and
Beach Center FQOL domains defined
• Existing HCBS waiver evaluations reviewed for FQOL domains captured
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.
RESULTSExisting HCBS Evaluations
NCI Family Indicators Subdomains Beach Center FQOL DomainsChoice & Control: Families determine services & supports Disability-related supports: Satisfaction with services and
supports
Family Outcomes: Supports make positive difference in lives Disability-related supports: Satisfaction with services and supportsFamily interactions: Family enjoys time together, solves problems and accomplishes goals together
Satisfaction: Services & supports are adequate Disability-related supports: Satisfaction with services and supports
Family Involvement: Individual with I/DD not living in home N/A
Community connections: Family actively participating in community
Emotional well-being: Having supports to handle daily life stress & time to pursue other interests
Access & Support Delivery: Families getting services & supports needed
Disability-related supports: Satisfaction with services and support
Information & Planning: Families have needed information for planning
Disability-related supports: Satisfaction with services and 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
HCBS Waiver
Family Support Services
Family Centered Approach
Enhance FQOL
FederalCenters for Medicare & Medicaid ServicesAgency for Healthcare Research & Quality
Advocacy Groups
American Association of Retired PersonsUnited Cerebral Palsy
State
National Core Indicators (HSRI & NASDDD)
Note: Presentation is funded by the USF COPH Student Honorary Award for Research & Practice “SHARP” award program.
Email: [email protected]
