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 Health Care Bill

IIn another attempt to repeal Obamacare, Republicans put forward an amendment, the Skinny Repeal bill, on July 28, that would have repealed individual and employer mandates and given states the power to weaken consumer protections. Sixteen million people would have lost health insurance coverage. If it had passed and gone to conference with the House-passed bill, significant dismantling of the Medicaid program might have occurred. Senators McCain (R-AZ), Collins (R-ME), and Murkowski (R-AK) joined all of the Democrats to defeat the bill on a vote of 49-51. Following the vote, Senator McConnell announced that Republicans would be moving on to the National Defense Authorization Act.


FY 2018 Appropriations

On July 19, the House Appropriations Committee approved its version of the FY 2018 Labor-HHS-Education Appropriations bill. The Committee bill includes level funding for the Lifespan Respite Care Program at $3.36 million and level funding for the National Family Caregiver Support Program ($150.6 million). Funding information for other programs can be found in the House Committee Report. See especially pages 91-97 for programs administered by the U.S. Administration for Community Living. The Senate Appropriations Committee still has to consider its version of the FY 2018 funding bill.

Update on the Supporting Grandparents Raising Grandchilden Act

In May, Senators Susan Collins and Bob Casey introduced the Supporting Grandparents Raising Grandchildren Act (S. 1091) to create a federal task force and central place for information for families where grandparents and other relatives are raising children. At the end of June, Representatives Peter King (R-NY) and Jim McGovern (D-MA) introduced a companion bill in the House (H.R. 3105).


Learn more about the bill


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.