SD Network


The direct care worker shortage has gone from a problem to a crisis. According to a recent survey, 82% of assisted living facilities and 89% of nursing homes report a moderate to severe shortage of staff. It isn't just facilities either - home care agencies are reporting the same problems. The pandemic just added to this issue. People feel the bottom line is that these workers need better pay. 

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Last month, President Biden mandated that nursing home staff get the COVID vaccine or they risk losing their Medicaid or Medicare funding. However, it doesn't include home health care workers. Home care workers make up 53% of the workforce caring for people with disabilities and older adults. Advocacy groups and nonprofits are not currently asking the Biden Administration to require vaccines for these people though. The fear is that this would only add to the workforce shortage crisis. 

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Today the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregiving Advisory Council delivered its initial report to Congress. The culmination of a two-year, multi-faceted effort that gathered input from family caregivers across the country, the report provides an overview of many of the issues faced by family caregivers nationwide and provides recommendations for addressing them. 

The 26 recommendations fall under five goals: 
  • Increasing Awareness of Family Caregivers to increase public understanding of the contributions caregivers make, including helping individuals self-identify as caregivers so that they can get the support they need.
  • Engaging Family Caregivers as Partners in Healthcare and Long-Term Services and Supports to better integrate family caregivers into healthcare processes and systems.
  • Improving Access to Services and Supports for Family Caregivers including counseling, respite care, peer support, training on common in-home medical tasks, and practical assistance like transportation. Also included is a recommendation for strengthening the paid caregiver workforce.
  • Financial and Workplace Security for Family Caregivers to decrease the impact family caregiving can have on the financial well-being and professional lives of caregivers. 
  • Generating Research, Data, and Evidence-Informed Practices to help create policies and interventions that meaningfully help family caregivers.

The report also includes an inventory of federally funded efforts to support caregivers and interviews with 26 caregivers representing a range of caregiving situations and needs.

The recommendations from the report are the first step to developing a national strategy that will outline critical actions that can be taken at the federal and state levels and by local communities, philanthropic organizations, healthcare providers and providers of long-term services and supports, and others to better support family caregivers. 

More than 53 million people provide a broad range of assistance to support the health, quality of life, and independence of someone close to them. Millions of older adults and people with disabilities would not be able to live in their communities without this essential support, and replacing that support with paid services would cost an estimated $470 billion each year. 

While family caregiving is rewarding, it can be challenging, and when caregivers do not have the support they need, their health, well-being and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated at $522 billion each year. All of these challenges have been intensified during the pandemic.

“COVID-19 laid bare the need to address the urgent issues experienced by family caregivers,” said ACL Acting Administrator and Assistant Secretary for Aging Alison Barkoff. “The pandemic exacerbated the challenges of family caregiving. Balancing work, family and caretaking became even more difficult, and in many cases, caregivers had to completely leave the workforce. The pandemic has created a new urgency and momentum to address caregiving.”

The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act, (Public Law 115-119) directs the Secretary of Health and Human Services to develop a national family caregiving strategy. To inform that work, the RAISE Act also directed the establishment of the Family Caregiving Advisory Council providing recommendations on effective models of both family caregiving and support to family caregivers, as well as improving coordination across federal government programs. 

The Administration for Community Living is leading the implementation of the RAISE Act and facilitates the work of the RAISE Family Caregiving Advisory Council. 

The John A. Hartford Foundation and the National Academy for State Health Policy also support the Council, including development of the initial report, by providing resources, technical assistance, and policy analysis. The National Alliance for Caregiving also supported development of the report, collecting and producing the interviews that bring the caregiver voice to the report. The interviews also can be seen in a series of videos.   


Learn more about the RAISE Family Caregiving Advisory Council at

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2022 Circles of Life Conference 
May 12-13, 2022
Holiday Inn, Stevens Point WI 

The Circles of Life Conference is Wisconsin’s annual, statewide conference for families who have children of any age with disabilities and the professionals who support them.


Apply NOW to present at the 2022 Circles of Life Conference! Parents, family members, providers or anyone who has experience and knowledge to share is encouraged to apply. The conference will be an in-person event, with virtual options for participants.
Never Presented Before? Ask about a mentor. 
(Remember your audience will be family members just like you.)

The deadline for proposals is October 20.
To Apply and Learn More

We welcome all topics related to families. This year we're also looking for proposals that focus on topics for younger children and their families, like early intervention and the basics of programs and services. We welcome all topics related to families.
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In the Federal Aviation Administration Reauthorization Act, Congress called on the U.S. Access Board to examine the feasibility of wheelchair securement systems for passenger use in airplane cabins. In response, the Access Board commissioned the Transportation Research Board (TRB), of the National Academies of Sciences, Engineering, and Medicine, to conduct a study and issue a report. TRB organized a committee to conduct this assessment that included experts in aircraft interiors and safety engineering, accessibility, wheelchair design and crashworthiness, airline operations, and other disciplines. The committee’s findings are contained in the report "Technical Feasibility of a Wheelchair Securement Concept for Airline Travel: A Preliminary Assessment."

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The American Association of People with Disabilities (AAPD) is pleased to announce the application for the 2022 Paul G. Hearne Emerging Leader Awards is now open! We are seeking to recognize emerging leaders or groups with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community. While the Paul G. Hearne Emerging Leader Awards have previously recognized only two individuals, we are expanding the eligibility status that groups of people working on an initiative can apply for the award. Everyone in the group applying for the award must identify as an emerging leader with a disability. Two (2) individuals or groups will each receive $7,500 to further a new or existing initiative that increases opportunities for people with disabilities and $2,500 in recognition of their outstanding contributions to the disability community.

We encourage applicants who self-identify as an emerging leader with a disability to apply, regardless of U.S. citizenship, incarceration status, or age. We especially encourage people who have experienced intersecting forms of discrimination and from historically excluded backgrounds, rural areas, and U.S. territories to apply. An applicant’s status as an emerging leader is not necessarily tied to age, education status, employment, or specific experience or involvement in the disability community.

Apply for the 2022 Paul G. Hearne Emerging Leader Award by Wednesday, October 27, 2021 at 5:00pm ET.

AAPD will host a Zoom webinar on Wednesday, October 13, 2021 from 4:00pm to 5:00pm ET for any interested applicants to review the information and answer any questions you have. ASL and CART will be provided. Register here for the webinar. If you have any additional access needs, please email

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Most people with disabilities become advocates at some point. Often, it's not by choice, but whether by necessity trying to get what they need to live a successful life. Some people find that advocacy is their calling and turn it into a career. Others find it best to advocate for issues that pertain just to their situation. This article discusses the notion of disability activism in depth. It talks about the different things that go into activism. 

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The US Government Accountability Office recently released a report about how the CMS response to COVID could help in future emergencies. Things such as providing more home-delivered meals and giving providers hazard pay were some of the simple suggestions. 

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