Innovations in 33 States that Address the Respite Worker Crisis: Lessons from the ADDGS Program

1. Innovations in 33 States that Address the Respite Worker Crisis: Lessons from the ADDGS Program

2. Lyn M. Holley, PhD lmhholley@mail.unomaha.edu Rhonda J. V. Montgomery, PhD rm@uwm.edu Karl D. Kosloski, PhD kkoslosk@mail.unomaha.edu

3. ABSTRACT The recruitment and retention of an adequate long-term care respite workforce is a growing challenge nationwide. Many states have met the challenge with innovations that optimize local opportunities for enhancing recruitment and retention of this workforce. innovations in 33 states were analyzed as part of the national evaluation of the AoA Alzheimer's Disease Demonstration Grants to States (ADDGS) Program.

4. WORKFORCE CRISIS • Direct care workers provide eight of every ten hours of paid care received by long-term care clients. They are paraprofessionals in institutional settings, assisted living facilities, adult day care centers, and clients’ homes. • Demand for direct care workers is steadily increasing while recruitment and retention are widely reported to be increasingly difficult. • The number of elders who need long-term care will increase dramatically as the population aged 65 and older virtually doubles from 2000 to 2030.

5. ADDGS, AN OPPORTUNITY FOR INNOVATION The purpose of the ADDGS program is to develop statewide systems of support services for persons with Alzheimer’s disease and their caregivers, with emphasis on inclusion of rural and minority families. The shortage of direct care workers is a challenge for the ADDGS grantees who not only need a workforce of sufficient size, but also a workforce prepared to deal with the special needs of Alzheimer’s patients in hard to serve populations.

6. A REMARKABLE RANGE of INNOVATION States have used new approaches to expand direct care workforce capacity: • 5 states use new ways to improve rewards (wages, benefits, advancement, or stability of employment) , • 20 states have emphasized various types of training Several states go beyond the existing labor pool, and expand the workforce by redefining it: • 9 states have developed new sources of workers by enlisting volunteers, family members, and others, • 4 states help families employ persons not recruited from the direct care labor pool, and • 1state uses technology to partially replace workers.

8. Increase Workforce Capacity • Enhanced financial rewards for direct care work can attract and hold more workers. • Training also may have that effect if it enhances work satisfaction, status, or other rewards. • Organizations with staff trained to care for a broader range of clients (e.g., clients with dementia or from different cultures) may have more clients, and be able to offer workers more paid hours or more steady work.

9. 1. Strategies that Create Opportunities for Advancement Increase Rewards • Oklahoma’s program created a career ladder for direct care workers by adding a dementia competency requirement to a Geriatric Technician certificate program offered by Tulsa Community College. The Geriatric Technician Certificate is recognized by provider organizations with a wage increment for credentialed Certified Nurses Assistants, who may continue training and become Licensed Practical Nurses. • In Maryland free lance workers are being transformed into “Micro-enterprises” where individuals who work as in-home caregivers or use their own homes to provide day care can, with small business training and technical assistance, become small businesses. This may improve the skills, image, and financial circumstances of workers. Micro-enterprises also may improve the economic environment of these rural areas

10. 2.Strategies to Stabilize EmploymentIncrease Rewards • A rural Indiana program facilitates use of services. Families are offered vouchers to pay for adult day care services, transportation to the center, services of an aide who helps clients get ready to go to the center, and case management services. Maintaining the number of clients necessary for the economic viability of provider organizations can translate into stability of employment for direct care workers. • The Michigan “Up and Go” program supports family caregivers who work by providing aides who help clients get ready to go to adult day care, and in-home respite support for hours after the day care center closes. • Virginia’s program provides technical assistance and funds to help start two new services. One, sponsored with Our Lady of Mt.Carmel Church Outreach Ministry, provides in-home care for two cities with substantial minority representation. The other, sponsored with the Tappahannock Presbyterian Chapel of the Milden, is an adult day care center.

11. Training Increases Dementia Capacity • Alaska, Arizona, California, Illinois, Massachusetts, Maine, Michigan, Rhode Island, Minnesota, Nebraska, and Nevada offer dementia care training statewide to providers free of charge as an incentive for provider organizations to train direct care staff. • Arkansas, Mississippi, Tennessee, and Texas underscore the offer of dementia care training by making the training prerequisite to provider eligibility to supply the services funded by the project • In Alaska, Arkansas, Rhode Island, Virginia and West Virginia, statewide curricula required for dementia certification are being modified or developed. For example West Virginia will modify its statewide technical-vocational high school Certified Nurses Assistant curriculum and certification examination to include dementia care.

12. 4. Training Expands Provider Capacity • The New York project uses training to connect the network of government agencies and organizations that serves persons with Alzheimer’s disease with the network that serves persons with developmental disabilities. • In Wisconsin, the “Changing our Minds from Parent to Caregiver” training module was developed to enable small group living facilities to accept clients with dementia. • In Vermont, Adult Day Care Centers were assessed statewide, and then given customized packages including training, guidance and small grants to improve care for persons with dementia. • In Virginia and Oklahoma, volunteer service hours have been incorporated into an ongoing academic curriculum. Service learning at James Madison University exemplifies this type of approach with a new program to recruit students from the Schools of Social Work and Nursing to serve as volunteer providers of in-home companion respite service. • In Michigan, case managers and care staff of organizations that provide services needed at each stage of the disease process are trained in the Gentlecare™ philosophy that also underpins written service protocols, enabling them to serve a wider range of clients in a single setting.

13. Leveraging Cultural Competence • The Arizona Camino de Amistad project targets the specific needs of rural Hispanic communities in Maricopa County and is modeled on earlier ADDGS projects in Los Angeles (El Portal) and Seattle (SeaMar). • In California, bi-cultural, bilingual Care Advocates work with service providers to improve appropriateness of care for Asian families, and with families to facilitate understanding and acceptance of formal care. The program in Santa Clara targets Vietnamese and Chinese populations, and the Los Angeles site targets Japanese and Chinese communities. • The Texas project applies to two largely Hispanic communities (San Antonio and Rio Grande Valley) a statewide pilot case management project, and adapts the project to better serve Hispanic Texans dealing with Alzheimer’s disease. Each site has a Coordinator and an Advocate – both of whom are bilingual and bicultural.

14. Redefine the Workforce • Efforts to increase the size of the workforce are constrained by fiscal and demographic factors beyond the reach of individual employers. • Government reimbursement policies limit prices paid for direct services that, in turn, limit the wages paid to direct service workers. • Constraints on wages limit the segment of the labor force that can be recruited. • Given these barriers to increasing the supply of workers, several projects redefined the workforce.

15. 1. Use Volunteers as a Source of Direct Care Workers • To transform volunteers into a reliable source of care and include their efforts as a predictable part of a care plan, some reliable mechanism must be devised to recruit, train, supervise, and retain volunteers, and to match volunteers with assignments. ADDGS projects in eleven states, have taken three approaches to effectively incorporate volunteers into the direct care workforce:

16. Add volunteer respite services to established organizations • Tennessee and Virginia increased the number of federal Senior Companion volunteers trained in dementia care. • Florida has added dementia volunteer services to the outreach ministries of faith-based organizations • West Virginia includes a plan for programs such as the Boy Scouts or 4-H Clubs to add merit badges for dementia services to their programs.

17. Use a Community Project as a Focal Point for Volunteers • Mississippi volunteers will start and operate “First Friends” adult day centers in rural locations. • In Maryland volunteers will help operate and expand a Brookdale-style adult day care center serving persons with dementia. • Kansas volunteers lead drama, music, poetry, and watercolor activities in new rural Adult Day Care centers built around an “Arts and Inspiration” program.

18. Organize Teams of Volunteers at the Neighborhood Level • In Minnesota, projects at two locations fund some costs of organizations that match volunteers with assignments. • In Alabama, a national program developed originally to help persons with HIV has been expanded to help persons with dementia. When the needs of the family are greater than any one individual can meet, a team of five or six volunteers can meet the need. This program organizes volunteers into teams, and provides leadership and technical assistance.

19. 2. Help Families Be Competent Employers • Families, through personal contacts, often can find persons to recruit and hire who are not in the direct care labor pool. Families must • determine whether these workers can be trusted • supervise and teach them how to be caregivers, • deal with government paperwork or background checks. • Alabama’ s Tombigbeeproject serves a region of poverty and rural isolation with an elderly population that is 41.5% Black/African American. The project manager coaches the family to be employers, conducts basic dementia training for care workers the family hires, urges provider organizations to place the new care workers on their rolls and develop a presence in the underserved area.

20. Help Families be Competent Employers (continued) • Maryland’s Episcopal Senior Ministries Care (ESM Care) hired a full time social worker to coach families in supervision of caregivers the family employs. • Missouri’s demonstration families recruit and contract directly with workers. AA chapter staff assists families, and submits paperwork for a state-mandated background check. New hires are given a national Alzheimer’s Association “Basic Care Guidelines” booklet. • Rhode Island’s demonstration families may directly hire any individual who does not reside in the home of the Alzheimer’s care receiver and is not the spouse. Those hired are trained in dementia care. Families sign a limited durable power of attorney that allows the Diocese of Providence to do the bookkeeping and tax payment required.

21. 3. Apply Technology to Stretch the Workforce Indiana partnering with Guardian Medical Monitoring uses an innovative Technology to reconfigure work in a way that may reduce the number of workers needed to supervise a person with dementia. Persons with Alzheimer’s disease are monitored for safety by offsite observers using video cameras installed in clients’ homes. Remote observers alert family caregivers or care staff when intervention is necessary. A paid respite worker, a friend, or a neighbor can monitor more than one person with dementia, without being physically present.

22. Conclusions • The shortage of direct care workers, especially those serving clients in their homes, is a growing problem throughout the country. This worker shortage has been especially problematic for states participating in the ADDGS program, which have focused on developing systems of support services to provide dementia care to hard-to-reach populations. • The range of innovations within the ADDGS programs that are intended, either directly or indirectly, to enhance recruitment and retention of home care workers is remarkable. The broad range can be attributed to responsiveness to local needs and resources. • Further research is needed to fully realize benefit from the demonstration programs, so the most innovative and successful efforts are identified and disseminated.