1. Use of Personal Assistance Services by Public Insurance Recipients with Tetraplegic Injuries: Policy Recommendations Advanced by Spinal Cord Injury Consumers and Their Families Colette H. Duggan, BSN, MSN, PhD Rehabilitation Institute of Michigan and Wayne State University, Detroit, Michigan Acknowledgement Data for this analysis comes from a study: “Understanding the Health Care Needs of Publicly- Insured Recipients with Tetraplegia: A Family Perspective”. This 2-year qualitative/quantitative investigation is being funded by Grant #1051.II from the Blue Cross Blue Shield of Michigan Foundation. Principal Investigator: Colette H. Duggan, Ph.D. Persons with a spinal cord injury (SCI) have more complex health care needs than do members of the general population. They require access to a wide range of goods and services to maintain health and to prevent and/or minimize further functional losses. The most needy segment of the SCI population is that group with tetraplegic injuries. The severity of impairment puts individuals in this group at great risk for incurring serious medical complications over their lifetime. They require more goods/ services than do those with lower SCI injury levels. Public insurance recipients are the most vulnerable, as they have more limited access to resources. This presentation focuses on personal assistance services used by public insurance recipients with tetraplegia. The data come from qualitative interviews with 20 Medicaid and/or Medicare beneficiaries and their family/primary caregivers. Introduction Policy Recommendations Study Participants Who provides personal assistance? Objectives  Describe personal assistance services (PAS) used by public insurance recipients with tetraplegia;  Identify criteria used by SCI care recipients and their families to evaluate the work performance of individuals providing PAS;  Summarize policy recommendations for improving PAS that were advanced by SCI consumers and their family caregivers.  Most SCI care recipients were male; Most SCI caregivers were female.  All but three caregivers had family ties to the SCI care recipient. In these instances, no family members were available to provide SCI care.  A substantial minority of SCI care recipients had been injured for 11 or more years; Similarly, a substantial minority of caregivers had been providing PAS for 11 or more years.  The majority (65%) of family/primary caregivers report working for pay. They derived their income from wage jobs outside the home, from caring for the their injured relative, or some combination of the two.  Slightly more than half of all public insurance recipients were wholly insured by Medicaid and/or Medicare. A substantial minority also had auto insurance coverage or were covered by insurance held by other family members). Study participants identified a total of 66 individuals as currently providing at least 10 hours of hands-on SCI care in a given week. Unpaid family members: This group constituted the largest caregiver group [N=33] and included spouses/partners, parents, siblings, adult children, children (ages 9-15), and grandparents. Paid family members: This group constituted the next largest group (N=12] and included other relatives, as well. They were paid directly by the injured family member via Department of Human Services or indirectly through a state waiver program. Home Health Agency Employees: This group (N=11) provided PAS to 5 SCI consumers through a public insurance mechanism, a private insurance carrier (auto), or other governmental source. Independent contractors: 10 individuals provided PAS to 7 SCI care recipients. These individuals were not directly related to the SCI care recipient and were recruited through “word of mouth” or through newspaper advertisements. Individuals were paid directly by the SCI care recipient using Department of Human Services funds or personal “out-of-pocket” funds. Independent Contractors (15%) Agency Employees (17%) Family: Unpaid (50%) Family: Paid (18%) Satisfaction with Caregiver Services SCI care recipients were asked to rate how satisfied they were with the quality of SCI care they received from their caregivers. Overall, they reported a fairly high degree of satisfaction with personal assistance services. SCI consumers were “very satisfied” with their paid family caregivers (75%) and unpaid family caregivers (69%). Agency employees and independent contractors received more variable ratings, with scores ranging from “very satisfied” to “very dissatisfied”. The modal score for agency employees was “mostly satisfied”; the modal score for independent contractors was “somewhat satisfied”. Top 7 concerns of SCI consumers and their caregivers  Health insurance coverage for low- income uninsured caregivers of disabled public insurance recipients.  Respite care for family caregivers: (a) adult day care; (b) “paid” vacations for family caregivers receiving compensation for PAS to public insurance recipients; and (c) formal “in-home” respite services for short term care needs of families.  A community “registry” or “Hot Line” that links SCI consumers with certified personal care workers who seek employment.  In the Detroit metro area, a public transportation system (similar to SMART or “Dial-A-Ride) that would convey low- income caregivers to and from their clients’ homes—often located in the suburbs.  Greater oversight on the part of home care agencies with respect to: (a) criminal (background) checks of employees; (b) ongoing training and in-service programs for employees, and (3) detection of fraud in the billing practices of staff (and family caregivers who receive third party compensation) for services rendered.  Restructuring of the home health care industry (e.g. bonuses and benefits to retain a cadre of competent and experienced staff).

2. Use of Personal Assistance Services by Public Insurance Recipients with Tetraplegic Injuries: Policy Recommendations Advanced by Spinal Cord Injury Consumers and Their Families Colette H. Duggan, BSN, MSN, PhD Rehabilitation Institute of Michigan and Wayne State University, Detroit, Michigan Acknowledgement Data for this analysis comes from a study: “Understanding the Health Care Needs of Publicly- Insured Recipients with Tetraplegia: A Family Perspective”. This 2-year qualitative/quantitative investigation is being funded by Grant #1051.II from the Blue Cross Blue Shield of Michigan Foundation. Principal Investigator: Colette H. Duggan, Ph.D. Persons with a spinal cord injury (SCI) have more complex health care needs than do members of the general population. They require access to a wide range of goods and services to maintain health and to prevent and/or minimize further functional losses. The most needy segment of the SCI population is that group with tetraplegic injuries. The severity of impairment puts individuals in this group at great risk for incurring serious medical complications over their lifetime. They require more goods/ services than do those with lower SCI injury levels. Public insurance recipients are the most vulnerable, as they have more limited access to resources. This presentation focuses on personal assistance services used by public insurance recipients with tetraplegia. The data come from qualitative interviews with 20 Medicaid and/or Medicare beneficiaries and their family/primary caregivers. Introduction Policy Recommendations Study Participants Who provides personal assistance? Objectives  Describe personal assistance services (PAS) used by public insurance recipients with tetraplegia;  Identify criteria used by SCI care recipients and their families to evaluate the work performance of individuals providing PAS;  Summarize policy recommendations for improving PAS that were advanced by SCI consumers and their family caregivers.  Most SCI care recipients were male; Most SCI caregivers were female.  All but three caregivers had family ties to the SCI care recipient. In these instances, no family members were available to provide SCI care.  A substantial minority of SCI care recipients had been injured for 11 or more years; Similarly, a substantial minority of caregivers had been providing PAS for 11 or more years.  The majority (65%) of family/primary caregivers report working for pay. They derived their income from wage jobs outside the home, from caring for the their injured relative, or some combination of the two.  Slightly more than half of all public insurance recipients were wholly insured by Medicaid and/or Medicare. A substantial minority also had auto insurance coverage or were covered by insurance held by other family members). Study participants identified a total of 66 individuals as currently providing at least 10 hours of hands-on SCI care in a given week. Unpaid family members: This group constituted the largest caregiver group [N=33] and included spouses/partners, parents, siblings, adult children, children (ages 9-15), and grandparents. Paid family members: This group constituted the next largest group (N=12] and included other relatives, as well. They were paid directly by the injured family member via Department of Human Services or indirectly through a state waiver program. Home Health Agency Employees: This group (N=11) provided PAS to 5 SCI consumers through a public insurance mechanism, a private insurance carrier (auto), or other governmental source. Independent contractors: 10 individuals provided PAS to 7 SCI care recipients. These individuals were not directly related to the SCI care recipient and were recruited through “word of mouth” or through newspaper advertisements. Individuals were paid directly by the SCI care recipient using Department of Human Services funds or personal “out-of-pocket” funds. Independent Contractors (15%) Agency Employees (17%) Family: Unpaid (50%) Family: Paid (18%) Satisfaction with Caregiver Services SCI care recipients were asked to rate how satisfied they were with the quality of SCI care they received from their caregivers. Overall, they reported a fairly high degree of satisfaction with personal assistance services. SCI consumers were “very satisfied” with their paid family caregivers (75%) and unpaid family caregivers (69%). Agency employees and independent contractors received more variable ratings, with scores ranging from “very satisfied” to “very dissatisfied”. The modal score for agency employees was “mostly satisfied”; the modal score for independent contractors was “somewhat satisfied”. Top 7 concerns of SCI consumers and their caregivers  Health insurance coverage for low- income uninsured caregivers of disabled public insurance recipients.  Respite care for family caregivers: (a) adult day care; (b) “paid” vacations for family caregivers receiving compensation for PAS to public insurance recipients; and (c) formal “in-home” respite services for short term care needs of families.  A community “registry” or “Hot Line” that links SCI consumers with certified personal care workers who seek employment.  In the Detroit metro area, a public transportation system (similar to SMART or “Dial-A-Ride) that would convey low- income caregivers to and from their clients’ homes—often located in the suburbs.  Greater oversight on the part of home care agencies with respect to: (a) criminal (background) checks of employees; (b) ongoing training and in-service programs for employees, and (3) detection of fraud in the billing practices of staff (and family caregivers who receive third party compensation) for services rendered.  Restructuring of the home health care industry (e.g. bonuses and benefits to retain a cadre of competent and experienced staff).