Rare Disease Caregiving in America - New Report from the National Alliance on Caregiving
It is estimated that at least 25 million Americans currently have a rare disease or condition; the National Institutes of Health estimates that there are approximately 7,000 rare diseases. Many people who have rare diseases are misdiagnosed or undiagnosed, leaving their family caregivers to experience unique challenges related to access to appropriate support. Read More
Status of FY 2020 Funding for Lifespan Respite and the National Family Caregiver Support Program
In early May, the House Appropriations Committee approved its version of the FY 2020 Labor-HHS-Education Appropriations bill. It includes $5.5 million for Lifespan Respite, which is $1.39 million above the FY 2019 level and $200 million for the National Caregiver Support program, which is $18.8 million above the FY 2019 level. In addition to increased funding for respite for these two programs, the bill includes an increase of $4 million for the Alzheimer's disease program to issue grants to demonstrate the benefits of providing direct respite care services to caregivers supporting individuals living with Alzheimer's disease.
The Senate is expected to consider its FY 2020 funding bill in early June. On May 30, the National Respite Coalition sent a letter from 54 national organizations to Senate appropriators in support of $20 million for the Lifespan Respite Care Program, the amount authorized for FY 2020 in the Lifespan Respite Care Reauthorization bills recently introduced in the House and Senate. Because the purpose of the Lifespan Respite Care Program is to improve access to respite for family caregivers without regard to income, age or disability, the National Respite Coalition and its national partners continue to advocate for the higher amount of $20 million. The letter from national organizations also requested $202.7 million for NFCSP. On May 28, the National Respite Coalition also submitted written testimony to the Senate Subcommittee on Labor-HHS-Education Appropriations in support of increased funding for Lifespan Respite. Read more.
To learn more, call:
Or go to: