CMS Leadership Summit on the Direct Service Workforce and Family Caregivers

The Centers for Medicare and Medicaid Services (CMS) convened the Leadership Summit on Building Capacity and coordinating Support for Family Caregivers and the Direct Service Workforce in September 2010. The event brought together leaders in the field of caregiving to identify areas of policy intersections and develop recommendations for action for working together to address cross-cutting issues. Invited participants included national leaders in the fields of family caregiving, direct service workforce development, policy makers, consumers of long-term services and supports, caregivers, workers, and advocates. A focus group/think tank model was used to help participants make connections, find commonalities and differences, and establish a set of agreed upon goals.

From these discussions, consensus emerged that a high degree of commonality exists across caregivers in terms of their contribution to and significance in the lives of people with disabilities and their needs. Furthermore, discussions showed that the needs and interests of caregivers cannot fully be separated from the needs and interests of the people they support. To the extent that public policies support the interests of people with disabilities, caregivers benefit, and to the extent that caregivers are supported, people with disabilities benefit.

This white paper was presented in a webinar on June 3, 2011.

12 Common Goals
The leaders in attendance at the Summit ultimately articulated 12 common goals, each with specific policy recommendations. The goals are divided into Broad Systems Change Goals and Specific Goals for Family Caregivers and Direct Service Workforce. The Direct Service Workforce Resource Center is involved in new and ongoing efforts to move towards these goals. The goals, policy recommendations, and some efforts are detailed below.

Broad Systems Change Goals

1. Improve Coordination and Collaboration

Policy Recommendations:
Improve coordination across systems, agencies, programs, and populations and civilian and military government agencies; increase collaboration among caregiver stakeholders; break down silos.
Improve coordination across Federal benefit programs (e.g., Medicaid and Medicare).
Address differences in terminology used across settings and groups (e.g. caregivers, support provider, workers, informal/formal, unpaid/paid, consumers, program acronyms, job titles).
A key effort in breaking down silos is minimizing the artificial divisions placed between family and formal caregivers.The caregiving continuum used to be seen as simply unpaid family care and paid non-family care. This model is no longer adequate. A model must include: unpaid family, friends, neighbors and volunteers; paid family members; paid non-relatives; independent providers; and agency and residential care.The DSW-RC is considering efforts to define and collect data on core indicators across caregiving populations.These indicators could then serve as ways to measure goals and communicate across organizations.

2. Improve Long-Term Services and Supports System Navigation and Access

Policy Recommendations:
Provide information, training, and assistance to help people with disabilities and the caregivers supporting them, to navigate the system.
Assist all caregivers to access training and supports available to them as caregivers.
The DSW-RC would like to coordinate with the Aging and Disability Resource Center (ADRC) program to help ADRCs to build or connect with a matching service or registry of independent providers as part of their No Wrong Door/Single Entry Point Resource Directory. Additionally, the Resource Center would like to train ADRCs on providing workforce development services such as worker registries, consumer and worker training for participant-directed programs, providing I&R and benefits counseling specifically for DSWs and family caregivers.

3. Strengthen Public and Private Financing for Long-Term Services and Supports

Policy Recommendations:
Increase public financing for long-term services and supports, and increase awareness of the need for planning for long-term services and supports costs, to improve access to affordable services and supports for people with disabilities.

4. Promote Community Living, Inclusion, Employment, and Quality of Life for People with Disabilities

Policy Recommendations:
Promote community living, community inclusion, employment, and a good quality of life for people with disabilities. The more people with disabilities and their caregivers are visible and part of every day life, the more they will be recognized and valued.
Improve access to employment for people with disabilities in federal, state, and local government agencies and in service providing organizations.
Better support people with disabilities to make decisions and choices about the things that matter most to them.

5. Expand Participant Direction

Policy Recommendations:
Promote more person-centered, family-centered, and culturally competent policies and supports for people with disabilities and caregivers.
Ensure participant direction models are flexible enough to meet the needs of diverse groups of participants and families.
Extend reimbursement for participant direction in public long-term services and support programs to all populations, particularly for people with mental illness.
Ensure flexibility to allow participants and their family members/representatives to review and adjust their caregiving arrangements as wanted, needed, and appropriate.
The DSW-RC is considering writing a white paper to examine the National Trend towards Participant Direction. This paper would explore current models, potential for growth and expansion, and examine benefits and possible risks.

6. Focus on Quality of Care and Protection from Abuse / Neglect in Home and Community Based Settings

Policy Recommendations:
People with disabilities and both groups of caregivers would benefit from raised awareness about the issue of care and the importance of protecting people with disabilities from abuse or neglect.

Specific Goals for Family Caregivers and Direct Service Workforce

7. Improve Recruitment, Selection, and Retention of Caregivers

Policy Recommendations:
In preparation for the increased demand and reduced pool of paid and unpaid caregivers, improve recruitment, selection, and retention strategies for paid caregivers to strengthen and stabilize the paid workforce, improve quality of services for people with disabilities, address unmet need, and relieve the growing burden on family caregivers. Support supervisors—including individuals with disabilities, family members, and agency staff—to increase their competence to implement evidence-based best practices.

8. Increase Economic Security of Paid and Family Caregivers and People with Disabilities

Policy Recommendations:
Address common economic and support needs of family and paid caregivers and people with disabilities together.
  • Address common economic and support needs of family and paid caregivers together, through 1) expanded opportunities to earn Social Security credits for caregiving work, 2) financial literacy education/counseling and savings opportunities, 3) access to the Earned Income Tax Credit and other tax credits, 4) access to training, and 5) assistance hotlines that provider caregiver coaching and counseling about social services and supports.
  • Improve wages and access to health insurance and other benefits for paid caregivers (related and unrelated to person receiving services).
  • Provide incentives to promote the development of credentialing programs, apprenticeship programs, and other career leader options to support the development and retention of the direct service workforce by tying wages to skills/competencies or quality.
  • Expand support programs, tax laws, and workplace policies to improve economic security of family caregivers (e.g., flexi-time, job sharing, professional development opportunities, tax benefits/stipends, Family Medical Leave Act, health insurance).
  • Improve benefits and employment programs for people with disabilities, to enable them to improve the economic security for their caregivers.
  • Take actions to align the interests of people with disabilities and direct service workers, so they can advocate in unison for improving wages for workers while maintaining access to services.
The DSW-RC has suggested that it begin work on a compendium of strategies employers, funders (AAAs, waiver agencies, HMOs, etc.) and states can use to increase wages and compensation for DSPs.

9. Raise Awareness of the Importance of Home and Community Based Direct Service Workers and Family Caregivers

Policy Recommendations:
Increase acknowledgement and recognition of the value of the job being performed by paid and family caregivers by policy-makers, in private workplace settings, and in the media.

10. Integrate Caregivers in Team-Based Approaches

Policy Recommendations:
Promote person-centered and flexible team-based approaches. Promote coordination across funding streams and flexible reimbursement policies to enable team members such as direct service workers to fully participate.
Individuals with disabilities, direct service workers, family members, and support brokers should be included as integral members of service planning processes, care coordination interventions, and interdisciplinary teams. People receiving services and those closest to them have the most experience to contribute and are the best positioned to make these types of interventions successful.

11. Expand Peer Support

Policy Recommendations:
Expand access to peer support, most commonly used for people with mental illnesses, to all populations, by expanding reimbursement for peer support services and recruiting more peer support providers.
Offer opportunities for paid and family caregivers to support each other with issues they face as caregivers.

12. Invest in Training for Paid and Family Caregivers and for Consumers as Employers

Policy Recommendations:
The Paper (external link) details extensive training recommendations.
The DSW-RC is working on a roadmap of existing core competencies and has created a DSW Core Competency Set. We are engaging in a validation study of this competency set. A nationally validated set of core competencies could guide states in their training efforts, aid in recognizing the professionalism of this work, and assist generally in DSW development.
The Resource Center also is considering plans to create a new compendium of strategies to fund training programs and efforts.
  • DSW Competency Road Map Phases 1 and 2
  • DSW Core Competency Road Map Phase 3
    • This report is a result of the Phase III of the Road Map of Core Competencies project which was conducted in collaboration with stakeholders to synthesize results of the competency analysis and reach consensus on a set of core competencies for direct service workers. A large national sample of workforce stakeholders from different sectors, participated in this study through a modified Delphi research process. This report describes the process and includes a list of Core Competencies for the DSW.
  • DSW Core Competency Set

Created by: EKDilla. Last Modification: Wednesday 14 of August, 2013 10:07:37 EDT by EKDilla.

What's New?

The DSW Resource Center closed effective August 31, 2014. The site is being maintained as a static archive of resources through December 2014.

Please visit the CMS Workforce Page (external link) and visit our partners’ websites for additional information on or after December 31, 2014.

Check out the Winter 2014 edition of the DSW Resource Center newslettter!

The DSW Resource Center has published a White Paper summarizing this summer's webinar series.

The US Department of Labor (external link) announced a new rule to the Fair Labor and Standards Act which focuses on guaranteeing minimum wage and overtime for home care workers including those in the Direct Service Workforce. This rule will go into effect January 1, 2015. The DSW Resource Center created a Home Care Rule Page with information and resources related to this announcement.

We released two new Starter Kits for NWD/SEP Systems including ADRCS. Starter Kit for No Wrong Door/ Single Entry Point Systems Working to Strengthen the Home and Community-Based Direct Service Workforce and Starter Kit for NWD/SEPs: Design Considerations for Publicly-Funded Matching Service Registries for Home and Community Services.

We published Coverage of Direct Service Workforce Continuing Education and Training within Medicaid Policy and Rate Setting - A Toolkit which presents strategies and methods for covering the cost of continuing education and training for the DSW.
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