young woman with Down's Syndrome and mother

Personal calls and letters make a difference

Let your voice be heard! Tell your elected officials that you believe that caregivers need their support. Find a list of all New York State's elected officials here.


ARCH National Respite Coalition

Credit for Caring Act Introduced in House and Senate

The Credit for Caring Act was introduced in the U.S. Senate (S. 1151) by Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA), and in the U.S. House (H.R. 2505) by Representatives Tom Reed (R-NY) and Linda Sánchez (D-CA).The Credit for Caring Act would provide some financial relief to family caregivers who work by helping with the cost of services such as in-home care, adult day care, respite care, and other types of support. Specifically, the bill would give eligible family caregivers the opportunity to receive a tax credit for 30% of qualified expenses above $2,000 paid to help a loved one, up to a maximum credit of $3,000.

Senate HELP Committee approves RAISE Act

On May 11, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiver Act (S. 1028) was approved unanimously by the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee.  The bill's champions include Senator Susan Collins (R-ME), Senator Tammy Baldwin (D-WI), Senator Lisa Murkowski (R-AK), and Senator Michael Bennet (D-CO). The RAISE Act would require the Secretary of Health and Human Services to develop, maintain and update an integrated national strategy to recognize and support family caregivers. It also specifies actions that government, communities, providers, employers, and others can take, including development of respite options, to recognize and support family caregivers. An earlier version of the bill was passed by the Senate in the previous Congress, but never considered in the U.S. House of Representatives.

Senator Susan Collins and Senator Casey Introduce Bi Partisan Bill to Support Grandfamilies

U.S. Senate Special Committee on Aging Chairman Susan Collins (R-ME) and Ranking Member Bob Casey (D-PA) introduced  Supporting Grandparents Raising Grandchildren Ac (S. 1091), a bill to create a federal task force charged with supporting grandparents raising grandchildren. The legislation follows a March Aging Committee hearing on Grandparents to the Rescue: Raising Grandchildren in the Opioid Crisis and Beyond. At the hearing, Senate Aging Committee members heard from grandparent caregivers and experts, including Generations United's Deputy Executive Director Jaia Peterson Lent.

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Administration for Community Living (ACL)invitation to participate in an Environmental Scan of Community-Based Disability Organizations

The rapid expansion of Medicaid managed long term services and supports (MLTSS) and other efforts to integrate healthcare and long-term services and supports is creating new, exciting and yet challenging opportunities for Community Based Organizations (CBO) - seeking to work within these new program designs.
These new approaches mean that CBOs –  Area Agencies on Aging, aging services organizations, behavioral health organizations, Centers for Independent Living, developmental disability organizations, faith-based organizations, Native American tribal organizations (American Indian/Alaskan Native/Native Hawaiian), nutrition program providers, Protection and Advocacy Agencies, University Centers for Excellence in Developmental Disabilities Education, Research & Service, and other local service providers for persons with disabilities and/or older adults - need to think differently about the services they offer, the customers they serve, and the way they demonstrate the value they add to services and supports. Instead of contracting directly with government funders, CBOs are now negotiating contracts with hospitals, health systems, accountable care organizations (ACOs), health plans, and other integrated care entities.

To equip CBOs with the skills, training and experience needed to effectively negotiate and partner with integrated care entities and other payers, the Administration on Community Living is funding a three-year Business Acumen for Disability Organizations grant. This work is intended to ensure that CBOs are part of the evolving service delivery system and that their significant knowledge and experience serving people with disabilities is preserved. The grant is being implemented in partnership with 10 national organizations representing a variety of perspectives and experience on disability.

To best understand the needs of the disability network community, we are conducting an environmental scan of the business acumen of the disability network. Responses are being solicited from the following three categories, each with its own unique survey and survey link. The survey will be open through May 31, 2017.

Environmental Scan Survey Links: 

  • Managed Care Organizations (MCOs), Accountable Care Organizations (ACOs), and other healthcare and long-term services and supports payers, click here.

  • States currently operating or planning to implement a managed long-term services and supports (MLTSS) program, click here

Your responses will be used to guide the development of a web-based resource center, on-going training opportunities, and the development of an intensive learning collaborative.
As we work together to respond to this shifting landscape, we appreciate your candid and honest feedback to the environmental scan. Your perspective will help to ensure the resources developed through this effort are meaningful and relevant.
If you have questions related to technical aspects of the survey, please contact Adam Mosey at For questions related to the content of the survey, please contact Erica Anderson at A plain text version of the survey is available upon request. You may also call NASUAD at 202-898-2578.