A teenage girl with Down syndrome standing in a yard in front of a white fence with an older family member. The woman is laughing, with her hands on her granddaughter's shoulders. They are both looking at the camera.

The Arc Urges HHS to Address Caregiver Crisis

Washington, D.C. – In a series of critical meetings this week, The Arc will take important steps in urging the U.S. Department of Health and Human Services (HHS) to address the caregiver crisis facing millions of families. Nancy Murray, President of The Arc of Greater Pittsburgh at ACHIEVA, and James Cheely, President of The Arc of Barren County, Kentucky serve on the newly-formed RAISE Family Caregiving Advisory Council. The Council meets for the first time on Wednesday, August 28 and Thursday, August 29 in Washington, D.C. to develop recommendations to HHS Secretary Alex Azar.

Murray, who is co-chair of the Council, and Cheely bring a deep personal and professional understanding of the caregiver crisis for families and people with intellectual and development disabilities (IDD). Murray is the mother of two adult children with Down syndrome and was a caregiver to both of her aging parents. Cheely has a son with IDD. He is also a former president of The Arc of Kentucky.

“The RAISE Family Caregiving Advisory Council has been charged with a huge task.  I am honored and excited to be a part of it,” said Cheely. “I am looking forward to representing families of The Arc in these discussions.”

Murray and Cheely are available to speak about the growing national caregiving crisis and efforts to alleviate it.

“I am honored to be selected to be a member of the new Family Caregiving Advisory Council and to create awareness of the vital role that family caregivers play in the United States. At one time or another, many, if not most Americans, become a caregiver for an elderly parent, child with a disability, or spouse with a disability or illness,” said Murray. “We need to increase and strengthen the resources and supports for family caregivers. One possible solution to help ease the crisis is a federal paid leave policy.”

Less than half of caregivers reported having paid leave in The Arc’s Family & Individual Needs for Disability Supports (FINDS) 2017 Survey. The survey reflects the true extent of the crisis and the need for change.

The Council was established by the RAISE Family Caregivers Act enacted last year to help HHS address the caregiver crisis for family members and persons with IDD, seniors, veterans, and others. Senators Susan Collins of Maine, Lisa Murkowski of Alaska, and Michael Bennet of Colorado were original sponsors of the legislation. Florida Rep. Kathy Castor and New York Rep. Elise Stefanik originally sponsored the House version of the bill.


The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.