ALERTS

November 21, 2021

House Passes Build Back Better

Honor National Family Caregivers Month by contacting your Senators over the Thanksgiving recess and urge them to pass Build Back Better!

On November 19, the House passed its version of the Build Back Better Act. The House-passed bill includes:

• $150 billion for Medicaid home and community-based services, including funding to strengthen the direct care workforce, which specifically includes respite providers, strongly advocated for by the National Respite Coalition. This is an historic investment in both access to services and the direct care workforce.

• Permanent authorization of the Money Follows the Person Program.

• Four weeks of guaranteed paid and medical leave for all workers

• $5 million for the Lifespan Respite Care Program in addition to amounts otherwise available for FY 2022, and

• $150 million for the National Family Caregiver Support Program, and $40 million for its programs of national significance to fund "initiatives to address the behavioral health needs of unpaid caregivers of older individuals and older relative caregivers.

• $20 million for a Technical Assistance Center for Supporting Direct Care and Caregiving. In addition to developing and disseminating evidence-based strategies for recruitment, education and training, retention, and career advancement of direct care workers, the purpose of the center is to "provide recommendations for activities to further support paid and unpaid family 35 caregivers, including expanding respite care."

In addition to the important provisions described above, the bill includes historic investments for children, families and caregivers (universal preschool and affordable child care, child tax credit); to combat climate change; expand affordable health care; and strengthen the middle class through affordable housing, education, and tax credits.

ACTION: Call your Senators at (202) 224-3121 and urge them to retain these important provisions to invest in home and community-based services, strengthening the direct care workforce, paid leave, and the Lifespan Respite Care Program and NFCSP. You can also find Members' contact information here. Thanksgiving week is the ideal time to find them back in their home districts.

November 4, 2021

Update on the Build Back Better Framework

On October 28, President Biden released a new framework for the Build Back Better Act. Congress is still trying to reach agreement on the proposal, although moderate Senate Democrats have strongly signaled that the price tag is still too high and a path forward to final passage is on shaky ground.

Despite this roadblock, Speaker Pelosi announced yesterday that paid family and medical leave is back in the House bill after being dropped from the version released on October 28. The Build Back Better Framework also includes:

• $150 billion for Medicaid home and community-based services, including funding to strengthen the direct care workforce, which specifically includes respite providers, strongly advocated for by the National Respite Coalition. While this is considerably lower than the $400 billion originally proposed by the Administration, this is a historic investment in both access to services and the direct care workforce.

• $5 million for the Lifespan Respite Care Program in addition to amounts otherwise available for FY 2022 (see Lifespan Respite appropriations below), and

• $40 million for the National family Caregiver Program's activities of national significance to fund "initiatives to address the behavioral health needs of unpaid caregivers of older individuals and older relative caregivers."

In addition to the important provisions described above, read more about historic investments included in the Build Back Better Framework in children, families and caregivers (universal preschool and affordable child care, child tax credit); in combatting climate change; expanding affordable health care; and strengthening the middle class through affordable housing, education, and tax credits. See

Build Back Better Framework (White House website)

President Biden Announces Build Back Better Framework

Build Back Better Fact Sheet

Legislative Language 

ACTION:  Call your members of Congress at (202) 224-3121 and urge them to hold tight to investments in home and community based services, in strengthening the direct care workforce, the Lifespan Respite Care Program, and paid family leave You can also find Members' contact information here.

November 4, 2021

LIFESPAN RESPITE and NFCSP FY 2022 APPROPRIATIONS UPDATE and Consideration of a change in the Medicare Hospice Benefit

On October 18, Senate Appropriations Committee Chairman Patrick Leahy (D-Vt.) released the remaining nine Fiscal Year 2022 Appropriations Bills that have not yet been considered, including the Labor, HHS, and Education Appropriations bill. We are excited to report that the Senate bill includes $14.2 million for the Lifespan Respite Care Program, doubling the funding from FY 2021. This is the same amount included in the House-passed bill. This bill also includes increased funding for the National Family Caregiver Support Program ($230 million) and modest funds to continue to support the work of the RAISE Family Caregiving Advisory Council to complete its work on a national family caregiver strategy. 

The Senate bill also includes important language regarding the Medicare and Medicaid respite hospice benefit. The Appropriations Committee requests that the Centers for Medicare and Medicaid Service (CMS) provide a report to the Senate and House Committees on Appropriations within 180 days of the bill's enactment on the current capacity and best practices for the provision of hospice respite care, including in the home, and to consider increasing the amount of respite. The report should assess and provide recommendations on what would be needed to ensure greater access to respite care in the home for hospice beneficiaries and their caregivers. The current benefit requires the allowed 5 days of respite be provided in an inpatient facility.

A Continuing Resolution (CR) providing current level funding for these programs expires on December 3. To date, the Republicans in the Senate have not come to the table to negotiate a final FY 2022 appropriations bill. If action is not taken in the next four weeks, before the CR expires, the Senate will need to pass another short-term or year-long CR to keep the government open. 

For more information and a table of proposed FY 2022 funding levels for programs in the Departments of Labor, Health and Human Services and Education, see the Committee's Explanatory Statement. 

ACTION:  Call your Senators at 202-224-3121 and urge them to support the Senate appropriations bill released by Senator Leahy and to avoid another Continuing Resolution to fund these critical programs at a time when additional respite and caregiver supports are so desperately needed. 

See NRC LIfespan Respite Appropriations Alert

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October 1, 2021

President Signs Continuing Resolution to Keep Government Open while Negotiations Continue on Budget Reconciliation

On Thursday, September 30th, right before midnight, the Present signed a short-term funding bill (continuing resolution) to keep government programs funded at current FY 2021 levels though December 3. At the same time, Congress is still trying to reach agreement on the Build Back Better Act. Budget reconciliation is the strategy being used to make progress on provisions important for children and adults with disabilities, older adults, and their family caregivers, including investments in Medicaid home and community-based services and the direct care workforce; paid family and medical leave; child care; family caregiver tax credits and more.  

House Committees recently marked by their portions of the Build Back Better Act (H.R. 5376), and the House Budget Committee reported out the final package. A priority for the National Respite Coalition is funding for home and community-based services and strengthening of the direct support workforce. The House bill includes $190 billion for these provisions, an amount considerably lower than the $400 billion investment originally proposed by the President. Senator Bob Casey (D-PA) has indicated he will advocate for $250 billion for HCBS in the Senate reconciliation package. 

Advocates are also still urging inclusion of the the Credit for Caring Act (H.R. 3321), that provides a family caregiver tax credit, in the final Budget Reconciliation package. The House Ways & Means Committee included a family caregiver tax credit consistent with this bill in legislation they approved in September.

There are still many moving parts in this legislative process. Moderate Democrats are calling for a lowering of the $3.5 trillion price tag before they can support the budget reconciliation package, and progressives are saying they will not support the bipartisan Infrastructure bill that was expected to be voted on this week, unless they have commitments to higher funding levels for their priorities in Budget Reconciliation.

More challenges are expected in the Senate. While the hope is that the Senate will take up the House bill once it is passed, Senators Manchin (D-WV) and Sinema (D-AZ) are signaling their preference for a legislative package scaled down to $1.5 trillion. 

ACTION:  Call your members of Congress at (202) 224-3121 and urge them to include $400 billion in budget reconciliation. You can also find their contact information here. The devastating economic and health effects of the pandemic for people with disabilities, older adults, and their caregivers cast a harsh light on the severe shortage of HCBS and direct care workers and community options. The full $400 billion is necessary to ensure that HCBS is accessible to all in need.

The NRC is supporting inclusion of many other provisions in the final budget reconciliation package including paid family and medical leave, expanded Medicare benefits, and a family caregiver tax credit.

For more information, see H. Rept. 117-130—Report from the Committee on the Budget to accompany H.R. 5376 (Scroll down to the bottom of the page) [Note: Document provided in eight portions due to filesize limitations.]

August 2, 2021

ADVANCING HOME AND COMMUNITY-BASED SERVICES THROUGH BUDGET RECONCILIATION

Congress is finalizing budget top level numbers that will give Congressional committees direction on creating the final budget reconciliation package. Budget reconciliation requires a simple majority in the Senate for final passage, unlike most other legislation which requires 60 votes. However, all 50 Democratic Senators will be needed for passage, as there is no Republican support. 

Legislative language from the Better Care Better Jobs Act, which calls for $400 billion for home and community based services and supports for the direct care workforce, will be part of the reconciliation package. However, some lawmakers have proposed reducing HCBS funding to $150 billion.

The $400 billion is absolutely critical to providing long-overdue and much needed support for home and community-based services, including respite, for children and adults with disabilities, older adults, and their caregivers. The funding would be made available to states through a permanent 10% Medicaid FMAP (Federal Medical Assistance Percentages). The investment would also help strengthen the direct service workforce.

The National Respite Coalition signed onto a letter sent by a broad coalition of disability, aging, civil rights, and consumer organizations to Congressional leadership urging them to include and prioritize the full $400 billion to support access to Medicaid home and community-based services. 

ACTION:  Call your members of Congress at (202) 224-3121 and urge them to retain the $400 billion in budget reconciliation. You can also find their contact information here. The devastating effects of the pandemic for people with disabilities, older adults, and their caregivers, cast a harsh light on the severe shortage of HCBS and direct care workers and community options. The full $400 billion is necessary to ensure that HCBS is accessible to all in need.

August 2, 2021

Lifespan Respite Funding

On July 29th, the House passed H.R. 4502, the "minibus" FY 2022 appropriation package to fund the Departments of Labor, Health and Human Services, Education, Agriculture, Energy, Interior, Veterans Affairs, Transportation, and Housing and Urban Development.

Highlights of the House bill include $14.2 million for the Lifespan Respite Care Program, $250 for the National Family Caregiver Support Program, $23.5 million for Aging and Disability Resource Centers, $245 million for SeniorCorps programs, including $58.5 million for the Senior Companion Program, and $90 million for the Community Based Child Abuse Prevention Program (CBCAP). All of these funding levels represent significant increases over FY 2021 levels. Meaningful increases were also included for other programs authorized by the Older Americans Act as well as services for individuals with disabilities. 

The Senate has not yet acted on FY 22 funding.

The National Respite Coalition previously sent a letter from 52 national organizations to House and Senate Appropriations Committees requesting $14. 2 million for the Lifespan Respite Care Program in FY 2022. 

ACTION: You can take action, too! Grassroots action is the most important way to ensure increased funding for Lifespan Respite and other critical programs. To find out how, see the most recent National Respite Coalition Alert and share with your networks. 

RESOURCES: To see additional letters of support and NRC's written House and Senate testimony for the record, visit NRC legislative alerts.

House Committee Report 117-96 (with funding levels)

House Appropriations Committee Press Release 

Division by Division Bill Summary

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July 19, 2021

Better Care Better Jobs Act

The Better Care Better Jobs Act that authorizes a $400 billion investment in Medicaid home- and community-based services (HCBS) that President Biden committed to in the American Jobs Plan, is moving now through the budget reconciliation process under consideration by Congress. We have recently learned that negotiations in the Senate include a proposal to lower the amount to $150 billion, less than half of what the President recommended.The $400 billion is absolutely critical to providing long-overdue and much needed support for home and community-based services, including respite, for children and adults with disabilities, older adults, and their caregivers. The funding would be made available to states through a permanent 10% Medicaid FMAP (Federal Medical Assistance Percentages). The investment would also help strengthen the direct service workforce.

Section by section Bill Summary

ACTION: Call your members of Congress at (202) 224-3121 and urge them to retain the $400 billion in budget reconciliation. You can also find their contact information here. The devastating effects of the pandemic for people with disabilities and older adults cast a harsh light on the severe shortage of HCBS and direct care workers. The full $400 billion is necessary to ensure that HCBS is accessible to all in need.

July 15, 2021

House Committee Approves FY 2022 Funding Bill with $14.2 million for the Lifespan Respite Care Program and increases for NFCSP 

Today, July 15, the House Labor-HHS-Education Appropriations Committee approved the FY 2022 appropriations bill for programs in its jurisdiction. The bill includes $14.2 million for the Lifespan Respite Care Program, the amount requested by the President and double the amount appropriated in FY 2021. The National Respite Coalition had previously sent a letter from 52 national organizations to House and Senate Appropriations Committees requesting this amount. The bill also includes $249.9 million for the National Family Caregiver Support program (NFCSP), which is $61 million above last year's funding level.

ACTION: Grassroots action is the most important way to ensure increased funding for Lifespan Respite and other critical programs. To find out how, see the most recent National Respite Coalition Alert and share with your networks.

Thank Committee Members. Most importantly, if your Representative serves on the House Appropriations Committee, thank them for their support!

Contact your U.S. Senators. The schedule for Senate action is uncertain, but it is never too early to contact your Senators and urge them to support $14.2 million for the Lifespan Respite Care program and $249.9 million for the NFCSP in the Senate Appropriations bill.

RESOURCES: To see additional letters of support and NRC's written House and Senate testimony for the record, visit NRC legislative alerts.

June 21, 2021

FISCAL YEAR 2022 APPROPRIATIONS UPDATE

On June 21, the National Respite Coalition sent a letter from 52 national organizations to House and Senate Appropriations Committee requesting $14. 2 million for the Lifespan Respite Care Program in FY 2022. 

On May 19, the House Labor, Health and Human Services, and Education Appropriations Subcommittee held a public hearing on the FY 2022 appropriations bill for programs in its jurisdiction. The National Respite Coalition submitted testimony for the record.  On June 19, 2022,  testimony was also  submitted for the record by the NRC to the Senate Subcommittee. 

In addition, a co-chair of the Consortium for Citizens with Disabilities Task Force on Autism, Developmental Disabilities and Family Support, of which the NRC is a member, testified at the House subcommittee hearing on May 19 requesting $14 million for the Lifespan Respite Care Program, $205 million for the National Family Caregiver Support Program, and for increases in other programs important to individuals with developmental disabilities, autism, and their caregivers. 26 CCD members also recently sent a letter to House appropriators making these requests.

Last month, fifteen bipartisan Members of the House of Representatives sent a Congressional letter to House appropriators requesting $14.2 million for the Lifespan Respite Care Program in FY 2022.

ACTION: You can take action, too! Grassroots action is the most important way to ensure increased funding for Lifespan Respite and other critical programs. To find out how, see the most recent National Respite Coalition Alert and share with your networks. Introduction of both the House and Senate bills are expected soon, so make contact now!

May 10, 2021

15 House Members Send Congressional Letter Urging a Doubling in Funding for Lifespan Respite in FY 22

On April 28, 15 Members of the House of Representatives from both parties sent a letter to the Labor-HHS-Education Appropriations Committee requesting $14.2 million for the Lifespan Respite Care Program in FY 2022. This amount reflects the President's budget recommendation to double funding for the program in the coming fiscal year. The letter was spearheaded by Rep. Jim Langevin (D-RI) and Rep. Brian Fitzpatrick (R-PA).

Congressional Letter

In addition, 26 national organization members of the Consortium of Citizens with Disabilities (CCD)  sent a letter to House and Senate appropriators that included a request of $14.2 million for the Lifespan Respite Care Program.

TAKE ACTION

If your Representative signed the letter, be sure to THANK THEM!   Even if your Representative did not sign onto this letter, it is not too late to contact them and urge them to support $14 million for the Program in FY 2022.  Contact your Senators as well. 

See National Respite Coalition Alert for more information.

Contact information for U.S. House Members. 

Contact information for U.S. Senators.

April 14, 2021

Urge your U.S. House Member to Sign Congressional Dear Colleague Letter for FY 2022 Lifespan Respite Funding

TIME IS SHORT! Deadline is Monday, April 26!

Representatives Jim Langevin (D-RI) and Brian Fitzpatrick (R-PA) are circulating a Dear Colleague letter to all Members in the U.S. House of Representatives urging them to sign onto a letter to the House Appropriations Committee requesting $14.2 million for the Lifespan Respite Care Program in the FY 2022 Labor, HHS, and Education Appropriations bill. This amount reflect the President's budget request to double Lifespan Respite funding in FY 2022.

The National Respite Coalition is asking for your help this week in making sure your U.S. House Member signs onto this letter!!!  The deadline for Members to sign on is now Monday, April 26!

The President released his FY 2022 "skinny" budget for discretionary programs that has lots of good news for family caregivers, including a recommended doubling of funding for the Lifespan Respite Care Program. The budget also proposes $551 million for home and community-based services, and additional funding for many other critical services for individuals with disabilities, older adults and their caregivers.

The Administration's budget proposal builds on significant investments already provided in the American Rescue Plan Act of 2021 for home and community based services, and in the proposed American Jobs Plan. The American Jobs Plan proposal includes $400 billion for the care economy, including support for home and community-based services for older adults and people with disabilities through an extension of the Money Follows the Person Program and by improving working conditions, higher wages, and more benefits for home care workers. See Policy, ARCH Quick News Update, April 2021 for more information.

Please contact your House Members TODAY and throughout the week and urge them to support this request. See NRC Alert and please circulate it widely. 

YOUR STATE LIFESPAN RESPITE PROGRAM ACCOMPLISHMENTS

When you reach out to your Congressional Member, share your state's Lifespan Respite program's accomplishments from the NEW ARCH report, In Support of Caregivers: Key Accomplishments of Lifespan Respite Grantees

NEXT STEPS

The vaccine rollout is brining hope for the future, but as the COVID-10 pandemic continues, it is important to educate Members of Congress about the need to support the nation's family caregivers who are, more than ever, serving as the linchpin of the nation's long-term services and supports system. While respite may look different during the pandemic, it may be the only contact and support a family caregiver has during these challenging and socially isolating times. It is important to note that the LRCP did not receive any emergency supplemental funding for COVID-19.

TAKE ACTION:

1. CALL your Representative at 202-224-3121 and urge them to support the President's budget request to double funding for the Lifespan Respite Care Program in the FY 2022 Labor, HHS, and Education Appropriations bill.

2. There are also lots of ways to connect virtually! Use this link for more contact information, including email addresses.

3. For talking points and to share this important message, circulate this  National Respite Coalition Alert to your networks!

January 6, 2021

Lifespan Respite Care Program Reauthorization Act of 2020 (H.R. 8906) Became Law on January 5, 2021. Public Law No: 116-324.

HR 8906, introduced by Rep.  Jim Langevin in the House on December 9, 2020, was a compromise bill that had originally passed the Senate in February 2020 as S 995 as amended (see actions below). 

This bipartisan bill reauthorizes the Lifespan Respite Care Program through FY2024 at $10 million annually . The bill requires each state agency that is awarded a grant under the program to report any data required by the Department of Health and Human Services for program monitoring and evaluation.

HR 8906 passed the House unanimously on December 10, 2021 and passed the Senate unanimously on December 18, 2020. The bill was signed into law on January 5, 2021 (P.L. Public Law No: 116-324).

Enrolled Bill

House Engrossed Bill

Congressional Record, December 10, 2020

Rep. Langevin's Press Release

Senator Baldwin's Press Release

December 21, 2020

Senate Passes Lifespan Respite Reauthorization Act, Clearing the Measure for the President's Signature

Agreements reached on COVID-19 Relief Package and FY 21 Omnibus Appropriation bill

Lifespan Respite Care Program Reauthorization.

On Friday evening, December 18, the Senate passed H.R. 8906, the Lifespan Respite Reauthorization Act. The bill, which authorizes $10 million annually through FY 2024, had passed the House the previous week. It is now awaiting the President's signature.

Congress had continued to fund Lifespan Respite every year since 2009, but the program officially expired in 2011. The National Respite Coalition and its national advocacy partners are grateful to bipartisan Congressional champions, Rep. Jim Langevin (D-RI), Rep. Cathy McMorris Rodgers (R-WA), Sen. Susan Collins (R-ME) and Sen. Tammy Baldwin (D-WI) for supporting the bill to assure program authorization through FY 2024. For previous Congressional action on program reauthorization, see the Lifespan Respite Reauthorization Center.

Representative Langevin's Press Release

Senator Tammy Baldwin's Press Release

FY 21 Funding for Lifespan Respite and other Caregiver Supports.

Congress also reached agreement on a final FY 2021 Labor-HHS-Education Appropriations bill that funds important discretionary programs that serve children and adults with disabilities, older adults and their family caregivers. NRC will do a more thorough analysis after the bill is enacted, but initial review finds that the Lifespan Respite Care Program will be funded at $7.1 million, an increase of $1 million over FY 2020. The agreement also includes $188.9 million (an increase of $3 million) for the National Family Caregiver Support Program , $10.8 million (an increase of $.5 m) for the Native American Family Caregiver Support Program, and $60.7 million (an increase of $5 million) for the Community-Based Child Abuse Prevention Program (CBCAP), which identifies respite as a core prevention strategy. The agreement also includes $400,000 for the Family Caregiving Advisory Council to pursue a National Family Caregiver Strategy, and $4 million to continue the Care Corps grants funded in FY 2019. The Labor-HHS-Education funding bill is part of the Consolidated Appropriations Act that is expected to be considered by the House this evening and then by the Senate. Find complete funding tables in the Joint Explanatory Statement, Division H, Department of Labor, Health and Human Services Education Act, 2021.

COVID-19 Emergency Relief Legislation.

Over the weekend, Congress also reached agreement on an emergency COVID-19 relief package. The $900 billion stimulus package includes $600 stimulus checks per person, including adults and children. These payments are not available to disabled adults who qualify as dependents or to people who do not have a social security number. The package also includes an extension of unemployment benefits of up to $300 per week; more than $284 billion for first and second forgivable Paycheck Protection Program (PPP) loans, and expanded PPP eligibility for nonprofit organizations; money for vaccine distribution and more. Much to the dismay of advocates for people with disabilities and older adults, $1.8 billion for home and community-based services that was included in the original bipartisan agreement was dropped from the bill. 

On a positive note for people with disabilities and older adults, the bill extends funding for the Medicaid Money Follows the Person Rebalancing Demonstration program at $450 million per fiscal year through fiscal year 2023, and extends the protections against spousal impoverishment for partners of Medicaid beneficiaries who receive home and community-based services through fiscal year 2023. Read more in this summary from the Center for Public Representation. 

The bill is expected to be acted on by the House and Senate this evening.

TAKE ACTION: 

Message: Contact your House Members and Senators and thank them for supporting passage of the Lifespan Respite Reauthorization Act and for funding the modest increase in the program for FY 2021.

• Call the Capitol Switchboard at 202-224-3121 to connect to your Senators' offices and ask for health or disability staff. If you get their voicemail, leave a message!

• Connect virtually! Use this easy tool for more contact information, including email addresses and social media connections.

December 14, 2020

NRC's Policy Recommendations for the Presidential Transition and the 117th Congress

The National Respite Coalition submitted policy recommendations to the Biden-Harris Transition Team urging the incoming Administration to support full funding ($10 million) for Lifespan Respite in its proposed Presidential budget for FY 2022, and to commit to meaningful recommendations from the RAISE Family Caregiving Advisory Council for a national family caregiving strategy with a promise of full and swift implementation.

Read the transition brief. 

December 3, 2020

National Respite Coalition is joined by 60 National Organizations in Urging Congress to include $10 million in FY 2021 Ominbus Appropriations Bill for the Lifespan Respite Care Program

Today, the NRC sent a letter from 60 national organizations to leadership on the House and Senate Appropriations Committees to urge that the pending FY 2021 Omnibus Appropriations bill, currently under discussion, includes $10 million for the LIfespan Respite Care program. This is the amount included in the House-passed FY 2021 Labor-HHS-Education appropriations bill last July.  The Senate appropriations bill includes $7 million for the program. Remaining time in the current Congress is limited, but hopefully, these amounts can be reconciled in a final bill before the continuing resolution expires on Dec 11. 

Please contact your House Members and Senators this week and urge them to support this request.  For action steps, message and talking points, see Nov 19 message below and the NRC Alert.  Please share widely.

November 19, 2020

Senate Introduces FY 2021 funding bill with an increase for the Lifespan Respite Care Program

The Lifespan Respite Care Program, the National Family Caregiver Support Program and many other federal programs important to family caregivers, people with disabilities, and older adults are currently being funded at current levels through a short-term continuing resolution (CR) through December 11 when it expires.

The House passed a Labor-HHS-Education appropriations bill in July that includes $10 million (up from $6 million in FY 2020) for the Lifespan Respite Care Program, the amount requested by the National Respite Coalition and its national partners in a letter to Congressional appropriators.

Last week, the Senate Appropriations Committee released a package of funding bills for 12 federal agencies, including funding for the Departments of Labor, Health and Human Services and Education. While most disability and aging programs are level funded in the Senate bill, it does include an increase of $1 million for the Lifespan Respite Care Program. 

NEXT STEPS

Given limited legislative days before this Congress adjourns, it is unclear if the House and Senate will be able to reconcile differences to pass a final funding bill for FY 2021, or if another CR will be enacted to fund programs into the new year. However, it would be worthwhile to reach out to your Senators and House Members to thank them for the increases for the Lifespan Respite Care Program in both the House and Senate bills and urge them to fund the program at the House-passed level of $10 million.

As the COVID-19 pandemic intensifies, it is important to educate Members of Congress about the need to support the nation's family caregivers. While respite may have taken on new forms, it may be the only contact and support family caregivers have during these challenging and socially isolating times. The LRCP did not receive any emergency supplemental funding for COVID-19.

TAKE ACTION:

• CALL your Representative and Senators at 202-224-3121 and thank them for providing increases for the Lifespan Respite Care Program in both the House and Senate bills. Urge them to take swift action to pass a final FY 2021 appropriations bill and include the House-passed level of $10 million.

• There are also lots of ways to connect virtually! Use this easy tool for more contact information, including email addresses and social media connections.

• Circulate this updated National Respite Coalition Alert to your networks!

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August 1, 2020

U.S. Senate Introduces HEALS Act that Fails to Protect Children and Families, People with Disabilities, Older Adults and their Caregivers.

CALL TO ACTION

Please join us and add your voices by contacting your Representatives and Senators!

TUESDAY, AUGUST 4 has been scheduled as a Day of Action. Please flood Congressional offices with calls and emails.

See sample messages, emails and tweets in Take Action below.

The Senate introduced its coronavirus relief legislation this past week, the HEALS Act.  It does not include many of the provisions for individuals with disabilities, older adults or their family caregivers advocated for by the National Respite Coalition and its national and state disability and aging partners. The proposal's response to the request for additional child abuse prevention funds is woefully inadequate.

In May, the House passed the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act (H.R.6800) that included many of the advocates' requests. See ARCH May 15 Legislative Alert for more information on the HEROES Act.

See Comparison of the HEALS Act and the HEROES Act from the Center for Public Representation.

The House and Senate are engaged in active negotiations. We are urging that any final agreement include the following funding increases and policy changes:

Individuals with Disabilities and Older Adults. The NRC and its national partners are urging the Senate to include increased Medicaid funding for home and community-based services; supports for direct support professionals (DSPs), including increased access to personal protective equipment (PPEs), and recognition as essential workers; and paid leave for family caregivers, including grandparents and siblings, of adults with disabilities.

The NRC signed onto a letter to Senate leadership, from 252 member organizations of the Consortium for Citizens with Disabilities, the Disability and Aging Collaborative, and other state and national organizations, in support of these provisions.

MESSAGE:

Urge House and Senate negotiators to include in its COVID-19 relief legislation:

• Dedicated and increased funding for Medicaid home and community-based services (HCBS)

• Paid leave for all family caregivers

• Support for Direct Support Professionals as essential workers and ensure they have access to personal protective equipment (PPEs)

• Emergency Child Abuse Prevention and Treatment Act (CAPTA) funding of $1 billion for Title II of CAPTA and $500 million for Title I of CAPTA.

TAKE ACTION:

• On August 4, CALL your Representative and Senators at 202-224-3121 to urge them to include this important funding and to support critical policy improvements.

• Use this easy tool for more contact information, including email addresses and social media connections.

FOR MORE INFORMATION AND TALKING POINTS

For Medicaid HCBS and disability and aging issues:

• The Arc Action Alert

• Center for Public Representation

• Justice in Aging

• Community Catalyst Toolkit

For CAPTA Funding Increases:

• Sample CAPTA COVID outreach email scripts

• Sample CAPTA tweets

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July 31, 2020

House Passes FY 2021 Labor-HHS-Education Appropriations Bill as part of Six-Bill Appropriations Minibus

Today, the House passed, on a 217 to 197 vote, a $1.3 trillion package of FY 2021 appropriations bills for the Departments of Defense, Commerce-Justice-Science, Energy and Water Development, Financial Services and General Government, Labor-HHS-Education, and Transportation-Housing and Urban Development. The Labor-HHS-Education appropriations bill includes $10 million for the Lifespan Respite Care Program, the amount recommended by the National Respite Coalition and 52 of its national partners in a recent letter to the Committee. This is an increase of $3.9 million over the FY 2020 enacted level. The Lifespan Respite Care program has not received any emergency COVID-19 supplemental funds, yet Lifespan Respite may be the only lifeline to supports for many family caregivers.

The bill also includes $193.9 million for the National Family Caregiver Support program, which is $8 million above the fiscal year 2020 enacted level, and $12.3 million for the Native American Caregiver Support program, an increase of $2 million. The CARES Act (P.L. 116-136) included $100 million to provide supplemental cargiver support during the pandemic.

While the CARES Act included $50 million to expand capacity at Aging and DIsability Resource Centers during the coronvirus pandemic, the FY 21 funding level remains at $8.1 million in the House-passed bill, the same as in FY 2020.

Youth Caregivers. The House Committee report includes an acknowledgement by the committee of the significant barriers and lack of support youth caregivers face and urges ACL and its RAISE Family Caregiving Advisory Council to consider the needs of youth caregivers in the development and execution of its national family caregiving strategy.

The House-passed bill also includes increases in maternal and child health, developmental disabilities services, and other important Older Americans Act programs. Read more and see Full Funding Tables in the House Appropriations Committee Report.

NEXT STEPS

The Senate has not yet considered any FY 2021 appropriations bills and is unlikely to do so before the November elections. However, it is critical to continue to urge them to move forward on a bill that includes these important increases for family caregivers and the family members they care for. One or more Continuing Resolutions are expected to keep programs running at current levels. Advocates will continue to push for program increases.

TAKE ACTION

Message:

Thank your Representative for passing important increases to support family caregivers, especially for the Lifespan Respite Care Program ($10 m) and the National Family Caregiver Support progam ($1923.9). 

Urge your Senators to take swift action on consideration of their companion funding bill and to include $10 million for Lifespan Respite and increases for the NFCSP!!

1. CALL your Representative and thank them for passing the bill.

2. CALL your Senators at 202-224-3121 to let them know you support $10 million for the Lifespan Respite Care Program in the FY 2021 Labor, Health and Human Services, and Education Appropriations bill, and increased funding for the National Family Caregiver Support Program.

3. There are lots of ways to connect virtually! Use this easy tool for more contact information, including email addresses and social media connections.

4. Circulate this updated National Respite Coalition Alert to your networks!

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 June 30, 2020

House and Senate Appropriations Committees to consider FY 21 funding for the Lifespan Respite Care Program

The House Appropriations Committee is expected to consider the FY 21 funding bill as early as July 7. The Senate Appropriations Committee could also take up their bill in mid-July. The National Respite Coalition is requesting $10 million for FY 21. This amount is in line with Congressional requests for the program. The Lifespan Respite Care program has not received any emergency COVID-19 supplemental funds, yet respite may be the only lifeline to supports for many family caregivers.

TAKE ACTION:

1. CALL your Senators and Representatives at 202-224-3121 to let them know you support $10 million for the Lifespan Respite Care Program in the FY 2021 Labor, Health and Human Services, and Education Appropriations bill.

2. There are lots of ways to connect virtually! Use this easy tool for more contact information, including email addresses and social media connections.

3. Circulate this updated National Respite Coalition Alert to your networks!

4. You can also post on Facebook and Tweet your support for increased funding for the Lifespan Respite Care Program.  Use the easy tool to reach your Representative and Senators. 

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 May 15, 2020

House Passes HEROES Act

TAKE ACTION - Urge your Senators to pass the HEROES Act immediately. 

On May 15, the House of Representatives passed the “Health and Economic Recovery Omnibus Emergency Solutions Act” (HEROES Act - H.R. 6800 ), a $3 trillion bill to address the coronavirus pandemic by providing additional assistance for health care, housing, education, employment, food assistance, elections, paid leave, and much more. The bill passed largely along party lines and the Senate is not expected to act quickly on the bill. Some of the provisions important to children and families, people with disabilities, direct service workers, and family caregivers include:

• Increases in the Federal Medical Assistance Percentage (FMAP) payments to state Medicaid programs by a total of 14 percentage points starting July 1, 2020 through June 30, 2021.

• An additional 10 percentage-point FMAP increase, capped at 95 percent of a state’s Medicaid costs, for providing specified home and community-based services (HCBS) which, among other things, can be used to recruit and train new direct support professionals who provide home care, raise wages and provide paid leave for direct support professionals, and provide HCBS to those on waiting listings, as long as the state uses the funds to supplement and not supplant existing HCBS funding. Funds can also be used to purchase emergency supplies and equipment, including personal protective equipment.

• Improvements to the Families First Coronavirus Response Act for paid sick and paid family leave including expanding the caregiving and medical reasons for taking paid leave including caring for family members; expanding the family care definitions to cover any adult family member with a disability, in addition to children; and expanding the number of paid weeks from 10 to 12.

In addition to Senate support for these provisions, the NRC will join disability and aging groups to continue to advocate for permanent reauthorization of the Money Follows the Person Program and other disaster relief for the constituencies we represent.

Read more about other provisions important to people with disabilities. Autism Society HEROES Act Summary

Listed here are a few of the programs serving vulnerable children and families that received increases in funding, including:

• $20 million for the Community-based Child Abuse Prevention Grant (CBCAP) program; and

• $20 million for Child Abuse Prevention and Treatment Act (CAPTA) State Grants; and

• $50 million for Family Violence Prevention and Services.

Read more about additional provisions for children and families in First Focus on Children HEROES Factsheet

For general information:

HEROES ACT OVERVIEW

HEROES ACT Title-by-Title Summary

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April 27, 2020

Coronavirus Relief for Seniors and People with Disabilities Act of 2020 (HR 6305, S. 3544) and other Legislative Priorities for these populations and their caregivers

The National Respite Coalition along with other members of the Consortium for Citizens with Disabilities sent a letter to Congressional leadership identifying the most critical priorities for the disability community that must be addressed in the next round of legislation addressing the COVID-19 pandemic. Among the priorities are additional funding for home and community-based services (HCBS) to help people with disabilities, paid sick days and paid leave for family caregivers who can’t work because they are caring for an adult with a disability or aging family member, access to personal protective equipment (PPE) for direct care workers, increased production of PPE and ventilators, and civil rights protections for people with disabilities.

Advocates are calling for inclusion of The Cornoavirus Relief for Seniors and People with Disabilities Act (HR 6305, S 3544) introduced in the House by Rep. Debbie Dingle and in the Senate by Senator Bob Casey in the next package of legisaltion. The bill authorizes a grant program to support Medicaid home- and community-based services during the public health emergency and support for the Direct Support Professional (DSP) and Home Health Workforce. For more information, read a brief prepared by the Community LIving Policy Center at Brandeis University, Understanding the Home and Community-Based Services COVID-19 Response Proposal by Joe Caldwell, Finn Gardiner, and Anna Cass.

March 27, 2020

New Laws to Address Economic, Social and Health Effects of the COVID-19 Pandemic

On March 19, the Families First Coronavirus Response Act was signed into law. The Families First Act provided enhanced unemployment insurance; emergency funding for federal nutrition and food security programs; a 6.2% increase in the federal medical assistance percentage (FMAP) — which determines the federal government’s share of Medicaid expenditures; free corona virus testing for everyone who needs a test; and paid sick leave for employees required to self-quarantine, to obtain a medical diagnosis or treatment for COVID-19. Paid family leave would also be available for employees who need to take time off to care for children.  

On March 27, 2020, Congress passed the Coronavirus Aid, Relief, and Economic Security Act (CARES Act), a $2 trillion stimulus package to address the harmful effects of the COVID-19 pandemic. The Act, that was signed into law, provides a broad range of supports and funding across multiple funding agencies. A partial list of actions include: rebate checks for adults & families in certain tax brackets, increases in unemployment benefits, and support for nonprofits.  

Emergency funds ($955 million) were also allocated for aging and disability services, including senior nutrition programs, home and community-based support services, the National Family Caregiver Support program ($100 m), elder justice, and independent living. For details on human services funding, see a summary from the Alliance for Strong Families and Communities.

The CARES Act also extends the Medicaid Money Follows the Person demonstration that helps patients transition from facility-based settings to the home setting through November 30, 2020, and extends the Medicaid spousal impoverishment protections program through November 30, 2020. This provision helps a spouse of an individual who qualifies for nursing home care to live at home in the community. For other health provisions, see Senate Committee on Finance Section-by-Section Summary.

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March 18, 2020

28 House Members Send Letter of Support to Fund Lifespan Respite at $10 million

On March 13, 2020, 28 Members of the House from both parties sent a letter to the Chair and Ranking Member of the House Labor, Health and Human Services and Education Appropriations Subcommittee requesting $10 million for the Lifespan Respite Care Program in FY 2021.

Thank you to all of our national partners 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 (R-PA) for championing the letter!

Final Congressional Letter

March 18, 2020

Older Americans Act Reauthorizations Headed to the President's Desk

On March 11, the House unanimously approved the bipartisan bill to reauthorize the OAA through 2024, the Supporting Older Americans Act of 2020, H.R. 4334. This was the final legislative step for passage. The bill is awaiting the President's signature.  See March 9 alert below for more information. 

March 9, 2020

Senate Passes the Supporting Older Americans Act to reauthorize the Older Americans Act

On March 3, the Senate unanimously approved the Supporting Older Americans Act of 2020 (H.R. 4334). The bipartisan legislation would reauthorize and strengthen the Older Americans Act (OAA), including Title IIIE, the National Family Caregiver Support Program. The bill has now been sent to the House for its consideration before heading to the President’s desk to be signed into law.

The bill represents an agreement reached by Congressional negotiators earlier this year. There were several new provisions that support family caregivers, including an extension of the authorization for the RAISE Family Caregivers Act for an additional year and improvements to the National Family Caregiver Support Program (NFCSP). The National Family Caregiver Program now includes 1) a definition of ‘caregiver assessment’ and assurances that information received from such assessments is taken into account when providing support services; 2) a requirement that the Assistant Secretary for Aging identify best practices for caregiver assessments; and 3) an allowance for the Assistant Secretary for Aging to award funds for activities of national significance that improve support provided to caregivers. The bill also removes the ten percent funding cap for older relative caregivers eligible for NFCSP services, including respite.

Read the bill and a section-by-section summary.

The National Respite Coalition joined 126 national organizations in a letter to support the bill.

TAKE ACTION

Message: Contact your Senators and thank them for supporting Senate passage. Call your House Representative and urge them to take swift action on the Senate-passed bill.

Call the Capitol Switchboard at 202-224-3121 to connect to your Senators' and Members" offices and ask for aging staff. If you get their voicemail, leave a message!

Email and Fax. In-person meetings and calling are most effective, but you can also email or fax your Senators. For contact information, use this easy tool!

February 27, 2020

Help with Member sign-ons needed by March 9 for

Bipartisan Congressional Funding Request for Lifespan Respite!!

Rep. Jim Langevin (D-2nd RI) and Rep. Brian Fitzpatrick (R-8th PA) are circulating a Dear Colleague appropriations letter in the House seeking increases for the Lifespan Respite Care Program in FY 21. They need your help, and help from your local affiliates, partners and coalition members, in getting Members to sign-on by March 9, 2020. The request is for $10 million in FY 2021 for the Lifespan Respite Care Program. Requests from as many Members as possible are critical to ensuring funding for the program next year.

We need your help ASAP to get a large number of Members of Congress from both parties to sign this bipartisan letter. 

But we only have until Monday, March 9, to secure their signatures on the letter. Please call your Representatives today and next week and urge them to sign on. If they haven’t seen the letter from Reps. Langevin and Fitzpatrick, you can send them the Dear Colleague Letter.

TAKE ACTION:

• Call the Capitol Switchboard TODAY at 202-225-3121 and ask for your Representative’s office. When connected, 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 $10 million for the Lifespan Respite Care Program in FY 2021. Deadline for Members to sign is March 9, 2020.

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

• Share this Alert TODAY. After YOU make a call to your Representative, share this alert TODAY with your coalitions, email listservs, families you serve, membership or affiliates.

• 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, use this easy tool!

February 2, 2020

Agreement Reached on Older Americans Act Reauthorization

Congressional negotiators reconciled differences between the House and Senate versions of the Older Americans Act reauthorization bills and reached agreement on a final, bipartisan, bicameral compromise bill, the Supporting Older Americans Act of 2020 (H.R. 4334).

Bill Highlights for Family Caregivers:

Extension of  the authorization for the RAISE Family Caregivers Act for an additional year.

Improvements to the National Family Caregiver Support Program (NFCSP) including:

• A definition of ‘caregiver assessment’ and assurances that information received from such assessments is taken into account when providing support services;

• A requirement that the Assistant Secretary for Aging identify best practices for caregiver assessments;

• Allowing the Assistant Secretary for Aging to award funds for activities of national significance that improve support provided to caregiversl

• Removal of the ten percent funding cap for older relative caregivers eligible for NFCSP services.

This bill can now move directly to the Senate floor for consideration and then back to the House for final approval, although timing of such action is uncertain.

Read the bill and a section-by-section summary.

January 7, 2020

Passage of the Further Consolidated Appropriations Act, 2020

At the end of December, the National Respite Coaition reported on passage of the Further Consolidated Appropriations Act, 2020, which includes FY 2020 funding for the Departments of Labor, Health and Human Services and Eduction. This alert provides additional details about FY 2020 appropriations for programs important to family caregivers and the persons in their care, and other critical provisions included in the bill. 

FY 2020 Funding

As reported previously, the bill that was sgined into law on December 20,  includes $6.1 million for the Lifespan Respite Care Program. This is an increase of $2 million over FY 2019 levels. The law also includes a $5 million increase for the National Family Caregiver Support Program ($185.9 million), with $100,000 set aside for implementing the RAISE Family Caregiver Advisory Council.  

The National Respite Coalition prepared a table summarizing FY 2020 funding increases for other programs important to children and adults with disabilities, older adults, and their family caregivers that were also enacted. See details in the:

National Respite Coalition Federal Fiscal Year FY 2020 Funding Table 

Read more in the Division A - Departments of Labor, Health and Human Services, and Education, and Relations Appropriations Act, 2020

Other Important Provisions

The Further Consolidated Appropriations Act also included the following important  provisions that were supported by the National Respite Coalition.

1) An extension for five months, through May 22, 2020, of the Money Follows the Person (MFP) demonstration program, and Medicaid spousal impoverishment protections for home- and community-based services (HCBS).

2) A 10-year extension of the Patient-Centered Outcomes Research Trust Fund, which funds the Patient-Centered Outcomes Research Institute (PCORI), a government-sponsored non-profit that investigates the effectiveness of medical treatments to improve patient care.

3) Extension of medical expense deductions: The legislation includes a temporary 2-year extension of the 7.5% threshold for the medical expense deduction.

4) Family First Transition Act, which addresses the expiration of child welfare demonstration projects by supporting states in the implementation of the Family First Prevention Services Act. This would help states transition to child welfare systems that strive to keep more children safely at home, instead of placing them in foster care. The Act includes four provisions: 1) A phase-in of the 50% well-supported requirement for prevention services reimbursement; 2) $500 million in one-time transition funding to help states and tribes implement Family First; 3) Short-term funding certainty for states with expiring waivers; 4) Renaming of the Promoting Safe and Stable Families Program in honor and memory of MaryLee Allen, a longtime child advocate and close friend and colleague of the National Respite Coalition. 

TAKE ACTION

Thank your Representatives and Senators for taking these important actions to increase support for Lifespan Respite and other programs supporting family caregivers. Find their contact information. You can quickly show your thanks by sending them a Tweet. Here is a list of their Twitter handles.

Thank you for your critical advocacy and for making your voices heard in Congress!! It makes a huge difference. Keep it up in the New Year! The National Respite Coalition stands ready to assist you!

November 6, 2019

Letter from the Leading Caregiver Organizations Regarding the RAISE Advisory Council

The National Respite Coalition signed onto a consensus letter from the leading caregiver-focused organizations in the nation to Administrator of the Administration for Community Living (ACL), Lance Robertson; Principal Deputy Administrator of ACL, Mary Lazare; Deputy Assistant Secretary of ACL, Edwin Walker; Mr. Greg Link; and RAISE Advisory Council Members. The letter expresses thanks to Administrator Robertson and ACL for launching the RAISE Family Caregiving Advisory Counel. In the letter, two specific issues were raised that the group felt needed to be formally and publicly addressed to ensure the work done by the RAISE Council is effective for all of those it is intended to reach:

1. The national family caregiving strategy must be inclusive of all caregivers of adults and children across the lifespan. This must include caregivers who have a significant relationship with, and who provide a broad range of assistance to, an individual with a chronic or other health condition, disability, or functional limitation.

2. We urged ACL to work with caregiving organizations to seek a legislative solution or possible Administrative change to preserve this Council and ensure it meets its intended purpose by extending or altogether eliminating the Council’s expiration date.

Read the letter.

To contact your US House member, visit here.

To contact your US Senator, visit here.

FY 2022 Lifespan Respite Appropriations 

Final Letter from 15 House Members to the Appropriations Committee in support of FY 2022 funding for the Lifespan Respite Care Act. 

Letter from 52 national organizations to House and Senate Appropriations Committee requesting $14.2 million for the Lifespan Respite Care Program in FY 2022. 

NRC Written Testimony for the Record of the House Labor, HHS, Education Appropriations Subcommitte public witness hearing in support  of Lifespan Respite Care Program FY 2022. 

NRC also submitted testimony for the record to the Senate Labor, HHS, Education Appropriations Subcommitte in support of FY 2022 funding for Lifespan Respite.

NRC Lifespan Respite Legislative  Appropriations Alert for FY 2022

ARCH and NRC Statements to the

RAISE Family Caregiving and the Supporting Grandparents Raising Grandchildren Advisory Councils

May 21, 2020 - ARCH Presentation to ACL's RAISE Family Caregiving Advisory Council

Watch the Video

February 7, 2020 - NRC comments in response to RFIs from the Administration for Community Living

RAISE Family Caregiving Advisory Council

Advisory Council to the Supporting Grandparents Raising Grandchildren

Presidential Transition Brief

December 2020 - National Respite Coalition's  Policy Recommendations to the Presidential Transition Team.