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University of Washington Publishes Self Directed Care Study
Heather M Young, Ph.D, ARNP, FAAN and Suzanne K Sikma, Ph.D, RN, UW School of Nursing
December 16, 2002
In 1998, the Washington State Legislature passed House Bill 1880, sometimes called the Self Directed Care (SDC) Act. SDC makes it legal for people with disabilities to direct their Independent Providers (IP) to perform certain health care tasks which previously could only be done by nursing staff. The case manager approves the number of hours per month, and the consumer is responsible for hiring, training and supervising the IP. Registered nurses may be contracted by the consumer to provide training to IPs at state expense. As a condition of implementation, this study was mandated to evaluate the policy.
We used a variety of methods including surveys, focused interviews, and document review. All eligible consumers enrolled in self-directed care between February 1, 2000 and June 30, 2001 were invited to respond to the satisfaction survey, with 125 consenting to participate, a 54.1% response rate, unusually high for a survey of this type. From the survey participants, 30 individuals were selected for in-depth focused interviews, intentionally representing regions of the state and intensity of self-directed care tasks. All participants were re-contacted in the second year. Consumers represented all regions of the state, had an average age of 59.0 years, with a range of 20-99 years (37.6% over 65 years) and were 51.7% female. Interviews were conducted in English and Spanish. All IPs registered to provide SCD, and all case managers with enrolled consumers received mailed surveys, with follow up phone interviews the following year, a total of 69 IPs and 29 case managers in the first year, and 76 IPs and 64 case managers in the second year. IPs and case managers of consumers in focused interviews were also included in this phase of the study, a total of 86 in-depth interviews.
During the study period, 273 consumers enrolled in SDC. By July 2002, this program had served a cumulative total of 1002 consumers. Consumers were self-directing a variety of tasks. The most common tasks were medication administration (over 50%), and bowel and catheter care (over 20% each). Injections were also common, with a combined prevalence of over 20% when considering both insulin and other injectables. Consumers directed an average of 2.4 tasks, with a range of 0 to 8 tasks and 50% of all consumers directing more than 2 tasks.
Consumers were highly satisfied with the program, citing the following benefits: it can meet my needs; promotes independence, control, choice, freedom, responsibility; improves quality of life; I can stay at home; I value my relationship with my IP; it is a less expensive option; it provides caregiver training; and, relieves family members. Few concerns were expressed, but some consumers indicated that this program still does not meet all their needs.
Consumers described how SDC improved their lives in the following ways: better timing and ability to control routine; freedom to choose; better family relations; get it done the way you like it; get to live at home; get out more; and, the stress of staffing is worth it.
In the words of consumers:
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(SDC) put me in charge. I say when to do what, how to do it and you know, if you don't want to be bothered then nobody can force you to be bothered. |
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Quality of life, like you know, I went to the fair this year, I hadn't been to the fair. So we took my wheelchair and that's how we went. I couldn't have done it otherwise. And it's been 2 or 3 years since we've been to a fair. And we got to go this year. |
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Well I wanted help around the house, my wife would have to do all my care and it's a tremendous drain on our relationship taking from a husband/wife to a patient/nurse type of relationship…it frees my wife up to be able to be a mom to the kids getting them ready for school instead of saying no, take care of yourself. |
Consumers reported that SDC requires adequate, competent staff. Consumers also reported that they actively manage the process of getting staff (recruiting/selection), keeping staff (retention), and training, supervising and monitoring staff. This was more of a challenge in rural areas. There was a range of consumer desire for external support, with some wanting no intervention beyond authorizing payment, and others desiring more frequent and intense consultation and advice from case managers and Registered Nurses, primarily for assistance with health condition problem solving and assistance with staff recruitment and training. Consumers were most satisfied when there was a match between their desire for support and the support that was available.
The most significant findings of this evaluation include:
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There were no negative outcomes attributable to SDC. Benefits included improvements in quality of life and quality of care for consumers. |
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There was high satisfaction with SDC and strong endorsement for the program. |
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People value staying at home and want to have control over their lives and care. Self-directed care supports autonomy and choice. |
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SDC offers another alternative in the array of options for persons with functional and health needs. |
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Both consumers and case managers believe that this program is preventing utilization of more expensive services (e.g., nursing homes, Emergency Rooms for routine care). |
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The SDC Program was well implemented – with minimal logistical issues and few barriers to ongoing service. |
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The biggest challenge to implementation is assuring adequate staffing, a reflection of a broader labor issue affecting consumers in all long-term care settings. |
This study was funded by WA State DSHS, and conducted in collaboration with DSHS, the Governor’s Committee on Disability Issues and Employment, and the Division of Developmental Disabilities. We wish to thank all participants, the stakeholder work group, and advocacy groups who encouraged participation. The full final report will be posted on the DSHS web site.
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