The Pete Frates Home Health Initiative

Ice Bucket Challenge Progress

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The Pete Frates Home Health Initiative is a pilot program of The ALS Association, run through its Massachusetts Chapter, to help fund the gap in coverage for in-home health care for people living with ALS who cannot otherwise pay for these services. The initiative is named in honor of Pete Frates, who inspired the world to fight ALS by taking the Ice Bucket Challenge. The program currently has a waiting list for participants.

The Pete Frates Home Health Initiative provides financial support for people living with ALS to receive in-home health care.

  • Many people living with ALS would prefer to live at home – not in a facility.
  • Living at home allows a person with ALS to maintain a higher quality of life.
  • Families often lose their source of income while caring for a person with ALS.
  • Support helps families access skilled nursing care to provide for medical needs.
    • Administering medication
    • Ventilator care
    • Delivering nutrition via gastrostomy tube
  • Support helps families assist a person with ALS perform basic daily living activities, especially as the disease progresses.
    • Personal hygiene
    • Getting dressed
    • Eating

The Pete Frates Home Health Initiative helps fill the gap between insurance coverage and the actual cost of in-home health care.

  • More than 1,000 donors came together to support the fund.
  • 5 families have been approved to receive support and 4 have received support to date.
  • Every dollar disbursed goes to pay for home health care.

The Pete Frates Home Health Initiative needs your support.

  • Most of the initial investment has been spent supporting care for families.

The Hayes Family:
"The support provided thanks to the Pete Frates Home Health Initiative helped turn an otherwise terrifying and isolating situation into a more bearable one. It’s extremely comforting knowing we are not alone."

Eric:
"Four months after Eric was diagnosed with ALS, he lost his operator’s license and livelihood. As the disease progressed, he became more and more confined to his home and began to fear that he would be forced into a long-term care facility. His insurance only covered 25 percent of the care he needed to stay in his home. The Pete Frates Home Health Initiative was able to fill the gap and relieve some of the financial burden our family faced."

For more information please contact Julie Lazarus at 202-464-8629 or julie.lazarus@als-ma.org.

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