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Caregiving Legislation and Advocacy — Federal Legislation

Summaries of pending legislation are for informational purposes only and do not necessarily indicate support by United Way Caregivers Coalition. Readers who would like to support or comment on a bill should contact their Senators and Representatives.  

Every effort will be made to update information on a quarterly basis. However, it remains the responsibility of the reader to confirm information status.

Click on the links below for information about federal legislation related to caregiving.

For all legislative summaries and status updates, visit Congress.gov and GovTrack.us

Adult Day Programs
Adult Day Center Enhancement Act (H.R.263)
This bill expands and enhances existing adult day programs for younger people with neurological diseases or conditions (such as multiple sclerosis, Parkinson's disease, traumatic brain injury, or other similar diseases or conditions) to support and improve access to respite services for family caregivers who are taking care of such people, and for other purposes.
Information: Click here

Status: Bill was introduced and referred to the House Committee on Energy and Commerce January 9, 2015.

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Caregiving, Resources to Help Keep Loved Ones at Home
In-Home Caregiver Assessment Resources and Education (CARE) Act (H.R. 5633/S. 2866)
The bill would improve the ability of unpaid caregivers to care for individuals in the home, increase opportunities for individuals who are in need of care to remain at home, and reduce or postpone the need for such individuals to receive care at an institution. This bill amends the Public Health Service Act to require the Administration for Community Living to award grants to carry out home visiting programs providing unpaid caregivers with the following:

  • caregiver education and training regarding medication management, food preparation, falls prevention and other subjects; 
  • services or referrals for services related to home care, such as transportation, home modification, or respite care; and
  • assessment and referral for physical and mental health services for the caregiver or person receiving care from the caregiver.

Status: Bill was introduced in the House and Senate on September 18, 2014 and referred to the House subcommittee on Health. It was read twice in the Senate and referred to the Committee on Health, Education, Labor, and Pensions.

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Caregiving, Respite
Caregiver Corps Act of 2014 (S. 2842)
This bill amends the Public Health Service Act by establishing a Caregiver Corps program that would provide caregivers with a respite volunteer from an approved organization whose purpose would be to temporarily ease the burden of caregivers of caring for their loved one. The purpose of this Act to establish a Caregiver Corps program to foster the creation of community-based Corps programs that provide for volunteer community service opportunities to address the shortage of assistance available for older adults and individuals with disabilities.
Information: Click here

Status: Bill was assigned to a congressional committee on September 17, 2014, which will consider it before possibly sending it on to the House or Senate as a whole. It was read twice and referred to the Committee on Health, Education, Labor, and Pensions.

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Caregiving, Services for Seniors
Older Americans Act Reauthorization Act of 2014 (S. 1562)
The Older Americans Act of 1965 was the first federal level initiative aimed at providing comprehensive services for older adults. It created the National Aging Network comprised of the Administration on Aging on the federal level, State Units on Aging, and Area Agencies on Aging at the local level. The network provides funding for nutrition and supportive home and community-based services, disease prevention/health promotion services, elder rights programs, the National Family Caregiver Support Program, and the Native American Caregiver Support Program.

Older Americans Act Reauthorization Act of 2014 amends the Older Americans Act of 1965 (OAA), to help aging parents care for their adult children with disabilities, for example:

  • Development of a consumer-friendly tool to assist older individuals and their families in choosing home and community-based services, when feasible.
  • Provide mental and behavioral health screening and falls prevention screening as well as screening for elder abuse, neglect, and exploitation.
  • Modify the National Family Caregiver Support Program, making permanent the funding for the caregiver allotment.
  • Extend the State Long-Term Care Ombudsman's responsibility to any resident of a long-term care facility regardless of age.
  • Include behavioral health in programs for mental health.

Information: Click here

Status: Bill was introduced on January 20, 2015. The committees assigned to this bill sent it to the House or Senate as a whole for consideration on January 28, 2015.

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Caregiving, Social Security Credits
Social Security Caregiver Credit Act of 2014 (H.R. 5024)
This bill amends Title II (Old Age, Survivors and Disability Insurance) (OASDI) of the Social Security Act to give caregivers credit for up to five years of unpaid care that they are providing for their loved ones.  It deems such an individual to have been paid a wage (according to a specified formula) during each month during which the individual was engaged for at least 80 hours in providing care to a dependent relative without monetary compensation for up to five years of such service.  Months ending after the date on which the caregiver attains retirement age, as defined by Social Security, cannot be included. 

Status: Bill was introduced on July 8, 2014 and was assigned to a Committee which will consider it before possibly sending it to the House or Senate as a whole.

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Disabilities, Adult Child Benefits
Child’s Insurance Benefits Improvement Act of 2014 (H.R. 5715)
This bill seeks to enhance Social Security’s Disabled Adult Child (DAC) benefit. The DAC benefit allows a person age 18 or older who meets the Social Security disability standard to receive benefits based on the prior contributions of a parent, who is themselves eligible for Social Security retirement or disability benefits, or who is deceased and was insured under Social Security. Currently, to qualify for the DAC benefit a person’s disability must have started prior to age 22. This bill would increase that age from 22 to 26 and apply this change retroactively, so that individuals who acquired disabilities between age 22 and 26 could qualify for benefits, regardless of their current age. Additionally, the bill would increase the ages associated with Social Security Disability Insurance (SSDI) recent work requirements by 4 years. This would extend SSDI coverage to more individuals ages 22 to 28 who have a limited work history, such as youth enrolled in post-secondary education.

Status: Bill was introduced November 14, 2014 and referred to the House Ways and Means Committee and the House Energy and Commerce Committee.

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Disabilities, Benefits
Social Security Disability Insurance and Unemployment Benefits Double Dip Elimination Act (H.R.918/S.499)
This amendment declares that for any week in whole or in part within a month that an individual is paid or determined to be eligible for unemployment compensation he or she shall be deemed to have engaged in substantial gainful activity and so be disqualified from receiving Social Security disability benefits after a certain period has elapsed. The revision is expected to prevent concurrent receipt of unemployment benefits and Social Security disability insurance, and for other purposes.
Information for H.R. 918: click here
Information for S.499t: click here

Status: H.R.918 was introduced and referred to the House on Ways and Means on February 12, 2015. S.499 was introduced and read twice and referred to the Committee on Finance on Feb 12, 2015.

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Disabilities, Tax-Exemptions
Achieving a Better Life Experience (ABLE) Act of 2014 (H.R. 647)
Tax Increase Prevention Act of 2014 (H.R.5771)
The Achieving a Better Life Experience (ABLE) Act would ease the financial burden for individuals with disabilities by creating tax-free accounts that can be used to save for disability-related expenses. These accounts can be created by individuals to support themselves or by families to support their dependents.

The bill would create tax-exempt, state based private savings accounts to fund disability-related expenses to supplement benefits currently provided by Social Security, Medicaid, employers, and private insurance. The account shall be treated in the same way as a qualified tuition program, such as a 529. A 529 account allows families to save money for an individual’s education without being disqualified for certain aid programs and prevents tax penalties on the money saved and any income earned from it.

Expenses would qualify as disability-related if they are for the benefit of an individual with a disability and are related to the disability. They include education; housing; transportation; employment support; health, prevention, and wellness costs; assistive technology and personal support services; and other expenses.

ABLE accounts will have no impact on Medicaid eligibility. Those receiving Supplemental Security Income (SSI) from Social Security shall have those payments suspended while maintaining excess resources in an ABLE account.

The Tax Increase Prevention Act of 2014 would amend the Internal Revenue Code of 1986 to extend certain expiring provisions and make technical corrections, to amend the Internal Revenue Code of 1986 to provide for the tax treatment of ABLE accounts established under State programs for the care of family members with disabilities.

There was a debate which resulted in the Passage/agreement in House to substitute HR647 (ABLE Act of 2014) with HR5771 (To amend the Internal Revenue Code of 1986 to provide for the tax treatment of ABLE accounts established under State programs for the care of family members with disabilities, and for other purposes) and move forward. Both bills include the provision for ABLE accounts.

Status: Bill H.R. 647 was introduced February 13, 2013. The committees assigned to this bill sent it to the House or Senate as a whole for consideration on July 31, 2014. Passed the House on December 3, 2014 and goes to the Senate next for consideration. Without objection, the Chair announced that the bill is laid on the table on January 2, 2015.

Status: Bill H.R. 5771 was introduced on December 1, 2014 and referred to the Committee on Ways and Means, Committees on Education and the Workforce, and the Budget. On December 2, 2014, the Rules Committee Resolution H.R. 766 reported to House. The rule provides for a closed rule for H.R. 5771 and H.R. 647. On December 3, 2014 H.R. 5771 was agreed to be considered under the provisions of rule H. Res. 766. The bill passed the House 378-46 with 10 not voting. On December 16, 2014, the bill passed the Senate 76-16 with 8 not voting. On December 19, 2014, H.R. 5771 was signed by the President and became Public Law.

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Family Leave and “Caregiving Days”
The Family and Medical Insurance Leave (FAMILY) Act (S. 1810/H.R. 3712)
This bill would create a national family and medical leave insurance program to provide workers with a portion of their wages for a limited period of time (up to 60 workdays, or 12 weeks in a year) to address their own serious health condition, including pregnancy or childbirth; to deal with the serious health condition of a parent, spouse, domestic partner or child; to care for a new child; and/or for specific military caregiving and leave purposes.  The FAMILY Act’s wage replacement rate builds on lessons from state paid leave programs in California and New Jersey to help ensure that caregiving time is affordable for lower-wage workers.

Under the FAMILY Act, employees and employers would contribute a small amount from each paycheck to an insurance fund. A new Office of Paid Family and Medical Leave would be created to administer the fund and make benefit determinations and distributions. Contributions would cover both benefits and administrative costs.  

The FAMILY Act would allow eligible employees to receive insurance benefits for up to 60 workdays or “caregiving days” (the equivalent of 12 weeks) within a one-year period.  Benefits would amount to 66 percent of an individual’s monthly wages (based on highest annual earnings from the prior three years), up to a capped monthly amount, and would be indexed to the national average wage index. If a person takes the maximum number of days, the benefits would range from a minimum benefit of $580 to a maximum benefit of $4,000 per month in the program’s first year.

Status: Bill was introduced on December 12, 2013 and was assigned to a Committee which will consider it before possibly sending it to the House or Senate as a whole.

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Medicare, Huntington’s Disease
H.R.842 – Huntington's Disease Parity Act of 2015
This bill would revise the medical and evaluation criteria for determining disability in a person diagnosed with Huntington's Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington's Disease.
Information: Click here

Status: Bill was introduced and referred to the House Committee on Ways and Means on February 10, 2015.

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Medicare, Observation Status
Improving Access to Medicare Coverage Act of 2013 (H.R. 1179 and S. 569)
The Medicare statute and regulations authorize payment for skilled nursing facility (SNF) care for a beneficiary who, among other requirements, was a hospital inpatient for at least three days before the admission to the SNF.  As a consequence of the classification of a hospital stay as outpatient observation (or of the reclassification of a hospital stay from inpatient care, covered by Medicare Part A, to outpatient care, covered by Medicare Part B), beneficiaries are charged for various services they received in the acute care hospital, including their prescription medications. They are also charged for their entire subsequent SNF stay, having never satisfied the statutory three-day hospital stay requirement.

Congressman Joe Courtney (D-CT) and Senator Sherrod Brown (D-OH) have a bill pending in Congress that would permanently fix the Observation Status loophole: the Improving Access to Medicare Coverage Act of 2013 (H.R. 1179 and S. 569).

Status: Bill was introduced on March 14, 2013 and was assigned to the Subcommittee on Heath on April 11, 2013 which will consider it before possibly sending it to the House or Senate as a whole.

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Mental Health, Access to Services
Strengthening Mental Health in Our Communities Act of 2014 (H.R. 4574)
This bill proposes to maximize the access of individuals with mental illness to community-based services, to strengthen the impact of such services, and for other purposes.  Similar to H.R. 3717 mentioned above, this bill is too lengthy to summarize here.

Information: Click here

Note: Efforts are underway to resolve the differences between H.R. 4574 and H.R. 3717 and to reach consensus on a version that can be brought to the full U.S. House of Representatives for a vote. NAMI has been working on Capitol Hill to express their strong support of this effort and urging inclusion of all of the provisions that are in both bills. NAMI has been working with colleague organizations on developing a sensible approach to permit communications with caregivers under HIPAA while protecting privacy.

Status: This bill was introduced on May 6, 2014 and referred to the Subcommittee on Crime, Terrorism, Homeland Security, and Investigations on July 21, 2014.

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Mental Health, Crisis
Helping Families in Mental Health Crisis Act of 2013 (H.R. 3717)
This bill proposes to make available needed psychiatric, psychological, and supportive services for individuals diagnosed with mental illness and families in mental health crisis, and for other purposes.

Information: Click here

Status: Bill was referred to the Subcommittee on Crime, Terrorism, Homeland Security, and Investigations on January 27, 2014. A subcommittee hearing was held on April 3, 2014.

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Seniors, Tax Elimination
H.R.589 – Senior Citizens Tax Elimination Act
This is an amendment to the Internal Revenue Code which repeals the inclusion of any social security or tier I railroad retirement benefits in gross income for income tax purposes. Appropriates funds to cover reductions in transfers to the Social Security and Railroad Retirement Trust Funds resulting from the enactment of this Act.

Information: Click here

Status: Bill was introduced and referred to the House Committee on Ways and Means on January 28, 2015.

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Veterans
Proposed Rule – Net Worth, Asset Transfers, and Income Exclusions for Needs-Based Benefits (2900-AO73) Docket ID (VA-2015-VBA-0003)
The Department of Veterans Affairs (VA) administers a needs-based benefit, “pension,” for wartime veterans and for surviving spouses and children of wartime veterans. The Department proposes regulations that would establish new requirements pertaining to the evaluation of net worth and asset transfers for pension purposes and would add regulations identifying those medical expenses that may be deducted from countable income for VA's needs-based benefit programs. Also, a proposal to implement statutory changes pertaining to certain pension beneficiaries who receive Medicaid-covered nursing home care, as well as a statutory income exclusion for certain disabled veterans and a non-statutory income exclusion pertaining to annuities is included.

Some of the proposed changes in the Federal Register include:

  • Imposes a 3-year look back period for transfer of assets, including gifts to person, trusts or purchase of annuities.
  • Denies claims for up to 10 years due to such transfers.
  • Exempts only the home and two acres from net worth. If the property exceeds 2 acres, it will count toward the net worth figure for eligibility.
  • Establishes a clear net worth limit of $119,220.00.
  • Calculates the penalty for widow's almost twice as long as veteran's penalties.

Information: Click here (pgs. 3839-3864)
For an impact analysis on the proposed rule, click here

Status: Rule was proposed on January 23, 2015. The VA must receive comments on or before March 24, 2015.

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Veterans, Caregiver Services
Military and Veteran Caregiver Services Improvement Act of 2014 (S2243)
This bill would expand eligibility for the family caregiver program of the Department of Veterans Affairs (VA) to include members of the Armed Forces or veterans who are seriously injured or who became ill on active duty prior to September 11, 2001 (currently, limited to service after September 11, 2001). The expansion of services to caregivers of veterans under the program would include child care services, financial planning services, and legal services.

The bill also amends the Public Health Service Act to designate a veteran participating in the program of comprehensive assistance for family caregivers as an adult with a special need for purposes of the lifespan respite care program.

Information: Click here

Status: Bill was introduced on April 10, 2014 and assigned to a congressional committee, which will consider it before possibly sending it on to the House or Senate as a whole. It was read twice and referred to the committee on Veterans Affairs.

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