Legislative Alerts

 

 

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.

************

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.
Additional Resources

Funding levels for other select programs supporting respite and family caregiver support are included in the National Respite Coalition's FY 2019 Funding Table.

Conference Report to accompany H.R. 6157

Joint Explanatory Statement (includes funding tables for programs administered by the Departments of Health and Human Services, Labor, and Education) 

Thank you to National Respite Coalition members, including State Respite Coalitions, and friends of respite who, with your advocacy, helped ensure retention of last year's increases for Lifespan Respite and the National Family Caregiver Support Program and for new funding for both the Family Caregiving Advisory Council to implement the RAISE Act and the Advisory Council to Support Grandparents Raising Grandchildren.


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


June 20, 2018

National Call-In Day to Celebrate Olmstead Anniversary: June 22, 2018

#FundMFP

Help celebrate the 19th anniversary of the Supreme Court’s Olmstead decision, which recognized the right of with disabilities to live, work and participate in their communities. Money Follows the Person (MFP) supports people to move out of nursing homes and institutions into the community. The EMPOWER Care Act helps make Olmstead a reality!

CALL CONGRESS TO HONOR THE OLMSTEAD ANNIVERSARY AND SUPPORT COMMUNITY LIVING BY COSPONSORING THE EMPOWER CARE ACT!

Help people living in nursing facilities and other institutional settings move back into their communities!

The Money Follows the Person (MFP) Program has helped more than 75,000 seniors and people with disabilities move out of nursing homes and institutions into the community. MFP has improved the lives of older adults and people with disabilities, 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. States are already having to scale back their programs, and without funding, could have to completely eliminate them. Last year was the first time that the number of people transitioned to the community declined. Without action NOW, states will lose momentum and more people will be stuck in institutions.

Bipartisan legislation introduced in both the House and Senate, the EMPOWER Care Act, would improve and extend the program for five years.

Please urge Congress to fund Money Follows the Person and cosponsor the EMPOWER Care Act before the funding runs out.

Take Action

June 22, 2018, National Call-In Day to Celebrate Olmstead Anniversary: #FundMFP

Call your Senators and Representative

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

Ask your legislators to extend the Money Follows the Person Program by cosponsoring the EMPOWER Care Act.

Use Social Media to Spread the Word

Visit the National Call-In Day for Community Living: #FundMFP webpage hosted by the Center for Public Representation for a guide to using the Capitol Switchboard, a call script, and additional talking points. Join the Facebook Event to get the latest updates.


March 25, 2018

President Signs Omnibus Appropriations Bill to fund programs for the remainder of FY 2018

On March 23, after tweeting that he would not sign the bill because it did not include provisions protecting Deferred Action for Childhood Arrivals program (DACA) recipients or funding for a border wall, the President signed an omnibus spending measure (Public Law No. 115-141), averting a government shutdown. The bill sets federal spending levels for appropriated government programs for FY 2018, which started last October 1 and will extend to September 30, 2018.

The funding bill includes increases for programs administered by the Department of Health and Human Services (HHS) that support caregivers, including a  $750,000 increase for the Lifespan Respite Care Program to $4.11 m and a $30 m increase for the National Family Caregiver Support Program (NFCSP), raising the FY 18 amount for the NFCSP to $180.6 million. The bill rejects many of the cuts to HHS programs that the House and the Administration previously proposed. Most of the aging and disability programs in the Administration for Community Living saw increases, including ADRCs, which will receive an additional $2 m ($8 m).

In addition, funding for the Social Services Block Grant, targeted for elimination by the Administration, was retained. While Title II, the Community Based Child Abuse Prevention grant program (CBCAP) that funds respite as a core service, was level funded, Title I of the Child Abuse Prevention and Treatment Act will receive a $60 m increase, the first increase for this program in decades! The Maternal and Child Health Program, which can also fund respite through the Children with Special Health Care Needs program, will receive an additional $10 m.

In the Department of Veterans Affairs, support for caregivers of Veterans, including the Program of Comprehensive Assistance for Family Caregivers (PCAFC) for post-9/11 Veterans, received a boost to nearly $840 million. This represents a greater than 40 percent increase over the Administration's request and a $100 million increase over the FY 2017 funding level. However, proposed provisions to expand the PCAFC to Veterans from all eras was not included in the omnibus appropriations bill. 

Advocates also had been working to include an extension of the Money Follows the Person (MFP) program in the omnibus bill, but they were not successful. The National Respite Coalition will join others in working to move this effort forward in the coming months.

The bill does include "Kevin and Avonte's Law" (S. 2070), which provides grants to develop locally based programs to prevent wandering, locate missing individuals, and develop tracking technology programs to locate missing individuals with dementia or children with developmental disabilities.

The text of the agreement for funding for programs in the Departments of Labor, Health and Human Services, and Education can be found here. See the tables beginning on page 116 for information about ACL programs. 


March 19, 2018

29 House Members Support FY 19 Lifespan Respite Care Program Increase

Ask Congress to include the EMPOWER Care Act (S.2227; H.R. 5306) in the Omnibus Appropriations bill.

Our House champions, Rep. Langevin (D-RI) and Rep. Harper (R-MS) spearheaded a letter addressed to the House Subcommittee on Labor, Health and Human Services and Education Appropriations requesting an increase in funding for the Lifespan Respite Care Program to $5 million in FY 2019. Twenty seven members of the House agreed to join them and sign onto the letter in support of the funding increase.

We still have a long way to go as Congressional Appropriations Committees begin working on the FY 2019 Appropriations process and NRC will send you the latest legislative information. Many thanks to those of you who worked diligently to secure additional signatures from your Members of Congress. If any of the Members who signed the letter are your Representatives, please reach out and thank them.

NRC is pelase to share with you a final copy of this Congressional Letter.


Empower Act - Money Follows the Person Extension

As the FY 19 appropriations process gets underway, Congress must first finalize funding for this fiscal year by the March 23 deadline when the Continuing Resolution that is currently funding programs will expire. We expect an Omnibus Appropriations bill to be considered by the end of this week that will fund government programs through September 30. Several major issues remain unresolved and we can expect numerous policy riders to be debated and considered before the final bill is signed.

For one, advocates are working to try to include the EMPOWER Care Act (S.2227) and its, recently introduced, House companion bill (H.R. 5306) in the Omnibus Appropriations bill. This legislation would extend the Medicaid Money Follows the Person (MFP) Program that assists people with disabilities and older adults transition from institutions back to their communities. For more information on how to contact your Representatives and Senators in support of the Empower Act, see the one-pager from the Center for Public Representation.


 

February 12

President's Fiscal Year 2019 Budget


On February 12, the President released his budget proposal, Efficient, Effective, Accountable: An American Budget, to Congress for Fiscal Year 2019. While the President's budget proposal recommends level funding for programs supporting family caregivers, such as the National Family Caregiver Support Program and the Lifespan Respite Care Program, recommendations also were made to drastically cut many programs, including Medicare, Medicaid, the Social Services Block grant and other critical aging and disability programs.

It is unlikely that all of the President's proposed cuts will be enacted by Congress. Moreover, the passage of the Bipartisan Budget Act of 2018 on February 9th (discussed above) increased defense and non-defense spending limits for both Fiscal Year 2018 and FY 2019, setting top-line spending caps well above both current-year levels and those in the president's budget. Nonetheless, very real threats to sustaining funding for Medicaid, health, child welfare, housing, education, disability and aging network services remain.

Next steps include Congressional passage before the fiscal year ends on October 1 (a March 23 deadline is looming) of an omnibus spending bill that funds the government for FY 2018 within the limits of the Budget Act.

Read more in the President's Budget and the HHS Budget in Brief.


February 9

FY 2018 Appropriations and Budget Update

On February 9, the President signed the Bipartisan Budget Act of 2018 (H.R.1892)/Continuing Resolution that extends FY 2018 funding for government programs to March 23, 2018. Most importantly, the Budget package included ten years of funding for the Child Health Insurance Program (CHIP), a two-year extension of funding for Family-to-Family Health Information Centers, doubling of funding for the Child Care and Development Block Grant, two years of funding for Community Health Centers, funding for the Opioid Crisis, and hurricane relief for Puerto Rico, the Virgin Islands, Florida and Texas. The package also includes enactment of the Family First Prevention Services Act intended to make improvements in the child welfare system, including increased support for grandparents and other relatives who care for children.

 

 

January 30, 2018

Urge Senators to Cosponsor the Empower Act (S. 2777)

The Money Follows the Person demontration program expired September 2016. The bipartisan EMPOWER Care Act (S. 2227), introduced by Senators Portman (R-OH) and Cantwell (D-WA), extends and improves the Money Follows the Person program (MFP). First authorized by President Bush in 2005 with strong bipartisan support, MFP faciliates the successful transition of individuals with disabilities and seniors out of nursing homes and back into their communities with family and friends.

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.

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

ACTION

National Call-In Day for Community Living: #FundMFP
February 1, 2018

Join disability advocates around the country this Thursday, February 1, for a National Call-In Day for Community Living. Urge your Senators to Co-Sponsor the EMPOWER Care Act to extend the Money Follows the Person program immediately.

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

Visit the National Call-In Day for Community Living: #FundMFP webpage hosted by the Center for Public Representation for a guide to using the Capitol Switchboard, a call script, and additional talking points. Join the Facebook Event to get the latest updates.

Social Media Day to #FundMFP
February 2, 2018

Join disability advocates around the country this Friday, February 2, for a Social Media Day to #FundMFP. Urge your Senators to Co-Sponsor the EMPOWER Care Act to extend the Money Follows the Person program immediately. 


January 2018

Action Needed to Protect Medicaid

House and Senate Republicans and Democrats are meeting at the end of the month to determine their respective caucus' legislative priorities for 2018. The disability, aging, and family caregiver communities must remind Congress that we support the Medicaid program and that they should not take steps to cut or cap the program.

Background

Key House and Senate leaders have indicated that they would like to cut spending on federal programs such as Medicaid in response to the 1.5 trillion dollar loss of revenue due to the tax cuts. Some leaders have been careful to say that Medicare and Social Security are off the table for possible cuts but Medicaid, food assistance, Supplemental Security Income and others remain targets. This is a continuation of the fight in 2017 except they are using different messaging. Medicaid is at risk whether they are calling it "welfare reform" or "opportunities" or "jobs for people", the end result is reducing enrollment in Medicaid and spending less on the program.

The only feasible way for Congress to enact major cuts or caps to Medicaid this year is through special budget rules (known as reconciliation) that allow the Senate to pass budget-related legislation with a simple majority. But reconciliation cannot proceed without first passing a budget resolution that includes instructions that would allow the Senate to use special budget rules. We must remind Congress that we want to protect Medicaid and other programs. Insist that Congress refuse to include reconciliation instructions in any budget legislation and instead seek bipartisan efforts to strengthen Medicaid and other social programs people with disabilities rely on.

Take Action
Call your Representative and Senators today - 202-224-3121. EVERY call matters. If we can prevent Congress from passing a budget, then Congress will not be able to cut or cap Medicaid. Act now as Congress will be deciding what direction to take at the end of the month.

What to Say:

  • I am your constituent.
  • I am a person with a disability or chronic condition (or a family member, or professional in the field).
  • Medicaid provides critical services to people with disabilities and the aging.
  • Protect Medicaid from cuts and caps.
  • Do not pass a budget that allows Medicaid cuts.

 January 2018

President signs RAISE Act into law

On January 22, the President signed the Recognize, Assist, Include, Support, and Engage Family Caregivers Act (RAISE) of 2017 Act (HR 3759) into law. The bill, introduced in the House by Rep. Gregg Harper (R-MS) and Rep. Kathy Castor (D-FL),  and Senator Susan Collins (R-ME) and Senator Tammy Baldwin (D-WI) would provide for the establishment of a Family Caregiving Strategy to be developed by the Secretary of Health and Human Services in consultation with heads of other federal agencies and an Advisory Council. The Strategy will identify recommended actions that existing Federal programs, State, and local governments, communities, health care providers, long-term services and supports providers, and others are taking, or may take, to recognize and support family caregivers in a manner that reflects their diverse needs, including the need for respite options.

The final bill reflected an agreement reached prior to passage to drop "National" in front of "Family Caregiving Strategy" as it was introduced originally and to  sunset the effort after three, rather than five years.