ALERTS

March 29, 2019

36 House Members Sign Bipartisan Congressional Letter in Support of Lifespan Respite Care Program funding for FY 2020

On Thursday, March 28, 2019, 36 Members of the House from both parties sent a letter to the Chair and Ranking Member of the House Subcommittee on Labor, Health and Human Services and Education Appropriations requesting $20 million for the Lifespan Respite Care Program in FY 2020.  Given the short turn around time for circulating the letter for sign ons, the significant increase  in the request compared to prior years, and the bipartisan nature of the request, we are encouraged that recognition of respite as a vital caregiver service and the need to support it is growing.  

Thank you to all of our national partners, especially the National Multiple Sclerosis Society, and to our powerful grassroots network and State Respite Coalition partners, for making calls and getting your Representatives to sign on. If you see your Member's name on the letter, be sure to reach out and thank them for their support!  And a very special thank you to Rep. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick for championing the letter! 

Final Congressional Letter

March 20, 2019

Urgent Appropriations Alert!

Urge your U.S. House Member to Sign Congressional Letter for FY 2020 Lifespan Respite Funding

TIME IS SHORT! Deadline March 26!

SEE NRC LEGISLATIVE ALERT FOR MORE TALKING POINTS!

FY 2020 Congressional Funding Request:

Rep. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick (R-PA) are asking Congressional appropriators to fund the LRCP at $20 million in FY 2020.

TAKE ACTION:

Call the Capitol Switchboard at 202-225-3121 and ask for your Representative’s office. Ask for appropriations, HHS or health staff. If you don’t reach them, leave a message!

Message: Please sign the Langevin/Fitzpatrick Dear Colleague Letter to Congressional appropriators requesting $20 million for the Lifespan Respite Care Program in FY 2020. Deadline for Members to sign is March 26, 2019.

Make it Personal. Share your personal respite story about why it is son important to you or why respite is so important in your state.

Phone calls or personal visits are best. For contact information or if you prefer to send an email or fax to your Member of Congress, visit the U.S. House of Representatives Directory.

Please pick up the phone and call today.

Then circulate this alert to your networks and colleagues - See printable Legislative Alert for easy steps, messages, and talking points.

January 18, 2019

House and Senate pass Medicaid Extenders Act!

The Medicaid Extenders Act of 2019 has passed both the House, and as of last evening, the Senate! The bill now awaits the President's signature.

The bill provides 3 months of funding for the Money Follows the Person program. States have until September 31, 2019, to spend the funds. The bill also extends the Medicaid's HCBS spousal impoverishment protections until March 31, 2019.

Advocates will use this winning momentum to urge the new Congress to enact longer extensions for both programs.
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Money Follow the Person
Money Follows the Person has been key to helping people with disabilities and older adults transition from institutional care back into the community.

Some Lifespan Respite grantees and state respite coalition partners have recognized the importance of supporting family caregivers of individuals who transition home, and partnered with their state's MFP to help develop respite registries, train respite workers, or provide other supports to family caregivers.

Spousal Impoverishment Protections

Medicaid’s “spousal impoverishment protections” make it possible for an individual who needs a nursing home level of care to qualify for Medicaid while allowing their married spouse to retain a modest amount of income and resources to pay for rent, food, and medication while the other spouse receives long-term services and supports. Extending this policy will ensure that married couples can stay together when dealing with the struggles that come with caring for loved ones with disabilities and conditions such as dementia, multiple sclerosis, or traumatic brain injury.
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Take Action

Call your Representative and Senators and 1) thank them for taking this action and 2) urge them to immediately consider longer term extensions for Money Follows the Person and the Spousal Impoverishment Protections.

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators or Representatives.

December 11, 2018

URGE Congress to Pass the Improve Act

Congress may vote this week, as early as today, on the Improve Act to extend the Money Follows the Person Program for three months. This will provide an important bridge to allow the next Congress to pass a longer term authorization for the program.

MFP expired September 30, 2016, and states are running out of funding. Seven states are already out of funding and ALL programs will end by the end of 2018.

Money Follows the Person has been key to helping people with disabilities and older adults transition from institutional care back into the community.

Lifespan Respite grantees and state respite coalition partners have recognized the importance of supporting family caregivers of individuals who transition home, and partnered with their state's MFP to help develop respite registries, train respite workers, or provide other supports to family caregivers.

The message is to urge Members of Congress to cosponsor and pass the Improve Act and fund the Money Follows the Person program to help more people with disabilities and older adults transition out of institutions and nursing homes and into the homes and communities of their choice.

Take Action

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Representative and Senators. Urge them to pass the Improve Act. 

November 15, 2018

As the holidays approach, urge Congress to pass the EMPOWER Care Act to reauthorize the Money Follows the Person (MFP) Program! States are running out of money – and we are running out of time to get MFP funding during this Congress.

MFP helps people with disabilities and older adults who want to move out of nursing homes or other institutions get back into their communities. MFP has assisted more than 88,000 individuals voluntarily move into a setting of their choice. MFP has improved the lives of older adults, people with disabilities, and their family caregivers, saved states money, and led to better outcomes. That’s why nearly every state has participated in the program! But MFP expired September 30, 2016, and states are running out of funding. People with disabilities deserve the right to live in the community, rather than spending their lives segregated into institutions.

TAKE ACTION: 

URGE CONGRESS TO SUPPORT COMMUNITY LIVING AND FUND MFP!

Call your Senators and Representatives on November 15th and ask them to cosponsor the EMPOWER Care Act!

It's time to reauthorize the program and pass the bipartisan EMPOWER Care Act this year!

For more information on the Empower Act .

Call your Members of Congress:

1. Call the Capitol Switchboard at: (202) 224-3121 (voice) or (202) 224-3091(tty) and ask to be connected to your senators or representative.

2. Repeat. You can use this easy tool to find your members of Congress.

Easy Call Script:

Hello, this is [Name]. I’m a resident of [Town, State].

I am calling to express my concern about the expiration of the Money Follow the Person (MFP) program.

MFP has enabled over 88,000 older adults and people with disabilities living in institutions to transition back to their communities. MFP is fiscally responsible: it has improved the quality of live for thousands of individuals and their family caregivers while saving states money. The program has expired and states are scaling back their programs, and without funding, could have to completely eliminate them.

I am asking [Member of Congress’ Name] to cosponsor and support the EMPOWER Care Act and reauthorize Money Follows the Person Program.

Thank you for taking my call!

[IF LEAVING A VOICEMAIL: please leave your full street address and zip code to ensure your call is tallied]

[Optional Add On]

Personal stories are the most effective form of advocacy. Talk about why Money Follows the Person is important for you, someone you know and love, and their family caregivers.

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This action alert was adapted from information provided by the Consortium for Citizens with Disabilities (CCD) and the Center for Public Representation.

September 30, 2018

The House and Senate passed and the President signed the conference report on the FY 2019 appropriations bill for programs administered by the Departments of Labor, Health and Human Services, Education, and related agencies that is part of a mini-omnibus bill (H.R. 6157) that also included funding for the Department of Defense, and a continuing resolutation that will fund government programs without full FY 2019 appropriations until December 7. 

The conference agreement includes funding for programs that support respite and family caregiver supports. Some highlights:

• The nearly $1 million increase for the Lifespan Respite Care Program in FY 2018 was retained to fund the program again at $4.11 million in FY 19.

• The $30 million increase for the National Family Caregiver Support Program in FY 2018 was retained and an additional $600,000 was included for FY 2019.  Of this increase, $300,000 is reserved for the establishment of the Family Caregiving Advisory Council authorized by the RAISE Act (P.L. 115-119) and $300,000 for the Advisory Council to Support Grandparents Raising Grandchildren authorized by the Supporting Grandparents Raising Grandchildren Act (P.L. 115-196).

• In discretionary funding for the Promoting Safe and Stable Families program, $20 million was included for Kinship Care Navigator Programs.

• $5 miilion for Care Corps, which will fund grants to public agencies or private nonprofit agencies to place volunteers in communities to assist family caregivers and/or assist seniors and individuals with disabilities in maintaining independence by providing non-medical care.

June 28, 2018

National Organizations Urge Swift Action at HHS to Implement the RAISE Act

On June 28, seventy-five national organizations, including the National Respite Coalition, who supported enactment of the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (P.L. 115-119), sent a letter spearheaded by AARP, to Department of Health and Human Services Secertary Alex Azar to urge immediate and effective implementation of the law. The RAISE Family Caregivers Act requires the Secretary of Health and Human Services to develop a strategy to support family caregivers within 18 months of enactment. The law establishes an advisory council to bring together representatives from both the private and public sectors to advise and make recommendations. The law outlines specific timetables for action and deliverables. Read the letter.

June 27, 2018

FY 2019 Appropriations Update for the Department of Health and Human Services

On June 15, the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies (Labor-HHS) marked up the FY 2019 Labor-HHS-Education appropriations bill. The full committee report was released with expectations that the committee would take up the bill on June 26, but the committee postponed the markup. The report recommends $4.11 million for Lifespan Respite Care Program, the same as the FY 2018 enacted level. The Committee recommended just over $180 million for the National Family Caregiver Support program (NFCSP), retaining the $30 million increase the program received in FY 2018.

The Senate Appropriations Committee also took action in June. The full Appropriations Committee reported out its FY 2019 Labor-HHS-Education Appropriations bill, recommending the same levels as the House bill for Lifespan Respite and slightly more for the NFCSP. The Senate Appropriations Committee recommended an additional $300,000 for NFCSP that is to be used to establish the Family Caregiving Advisory Council to develop a national strategy to support family caregivers as required by the RAISE Family Caregiver Act (PL 115-119) signed into law earlier this year.

The Congressional appropriations process for the Labor-HHS-Education bill still has a long way to go. This bill is traditionally the most controversial of all the appropriations bills with expected emerging issues that will require further debate. The likely scenario for action is to pass a short-term spending measure, a Continuing Resolution, by October 1, the start of the next federal fiscal year that will delay the final passage of a final FY 2019 Labor-HHS-Education appropriations bill until after the November elections.

To see the funding tables proposed by the House and Senate Appropriations Committees for all programs in the Departments of Health and Human Services, Labor and Education, see

House draft report

Senate Report 115-289

June 20, 2018

82 State and local groups  join 53 national organizations in supporting increased funding in FY 2019 for the Lifespan Respite Care and National Family Caregiver Support Programs 

The National Respite Coalition sent letters to the Chairs and Ranking Members of both the House and Senate Labor-Health and Human Services-Education Appropriations subcommittees this month in support of increases in funding for the Lifespan Respite Care and National Family Caregiver Support (NFCSP) Programs.  The first letter was signed by 53 national organizations representing children's, aging, disability and caregiving issues. The second letter was signed by 82 state and local groups, including state respite and caregiving coalitions, from 30 states and the Northern Mariana Islands. 

On June 14, the House Subcommittee on Labor-HHS-Education voted favoarbly to report out the FY 2019 funding bill for programs administered by the Departments of Labor, Health and Human Services, and Education, including the Lifespan Respite Care Program and the NFCSP. The Subcommittee has not yet released the approved funding levels pending full committee approval, which is expected the week of June 25th. The Senate Labor-HHS-Education Appropriations Subcommittee is scheduled to consider their version of the bill next week as well.

NRC Letter from National Organizations

NRC Letter from State and Local Organizations

The National Respite Coalition also submitted written tesitmony for the records of both the House and Senate Appropriations Subcommittees on Labor/HHS/Education in support of FY 2019 Funding for the Lifespan Respite Program. 

House Testimony with references

Senate Testimony with references 

KEEP UP THE GOOD WORK and TAKE ACTION!

Advocacy must be ongoing! Continued action is still needed to make sure we build on the small increases both programs enjoyed in FY 2018. Educating your Senators and House members through personal visits and phone calls are the best ways to be effective,

• Call or Email. Call your Representative and Senators and urge them to support funding for Lifespan Respite and the NFCSP in the FY 2019 funding bill. See this NRC Alert for more information and talking points.
• Personal Visits. Need a few tips on how to meet with your Member of Congress?  See the NRCs Advocacy Tools. 

To contact your US House member, visit here.

To contact your US Senator, visit here.

For Lifespan Respite Reauthorization Alerts,  please visit the Legislative Action Center

FY 2020 Lifespan Respite Appropriations 

FY 2019 Lifespan Respite Appropriations 

Letter from Rep. Jim Langevin (D-RI) and Rep. Gregg Harper (R-MS) and 27 Members of the House  to the House Appropriations Committee requesting $5 million for the Lifespan Respite Care Program for FY 2019. 

Letter from 53 national organizations to House and Senate Labor-H Appropriations Subcommittees in support of FY 2019 funding for the Lifespan Respite Care and National Family Caregiver Support Programs. 

NRC Legislative Alert for FY 19 Lifespan Respite Funding Request

National Respite Coalition Testimony for the Record of the House Appropriations Subcommittee on Labor/HHS/Education in support of FY 2019 Funding for Lifespan Respite Program, April  2018.

Similar testimony was submitted to the Senate Subcommittee on Labor/HHS/Education Appropriations. 

Past Congresses