CW: Death
Ali Harris met her future spouse when she was 18 years old. More than four decades later, she became his primary caregiver. She took care of all of his hygiene, health, and emotional needs around the clock.
Harris remembers how her husband’s moods and actions altered as his Parkinson’s and dementia became worse. In one especially terrifying incident, he became furious and pulled a door down on himself. Harris, who uses a walker recalls having to crawl across the floor to save him. Her husband has since died. Nonetheless, she believes that the urgent needs of other caregivers in Massachusetts remain paramount.
According to Harris, disabled and elderly people and their caretakers frequently fall through the cracks in policymaking. She and other individuals who participated in GBH’s “Have Your Say” campaign for state government, cites the estimated 780,000 family caregivers in Massachusetts as a population in need of increased support and attention from the government.
Family caregivers’ experiences range widely. They assist spouses, aging parents, children, siblings, and other loved ones with a wide range of medical, behavioral, and daily care needs. Support, they say, can be difficult to come by, even as authorities promote measures to make caregiving easier on families. The Alzheimer’s Association provided Harris with online support groups, a hotline, and other tools.
Martha Chisam, a retired school van driver, and her disabled son Danny, who’s in his 50s, visit the Life Center in Brockton. An acronym for Living Independently For Equality, the Life Center is a nonprofit based out of the community room in an apartment complex. It provides services and a gathering place for adults with disabilities, and it acts as a support center for their caregivers.
Chisam says that she and her son are not socially isolated; they participate in Life Center and other organization events, attend church, and spend time with family. Unfortunately, she’s having trouble finding someone to do the dental work he requires right now, whether it’s an office that accepts his insurance or a dentist who will put him to sleep with anesthesia to fill a cavity.
People with intellectual and developmental disabilities often struggle to receive dental care. According to a 2012 report from the Journal of the American Dental Association, a study of 4,732 adults with intellectual and developmental disabilities found that the frequency of untreated cavities was 32.2%, periodontitis was 80.3%, and edentulism was 10.9%. The average amounts of missing teeth, decaying, missing, and filled teeth, respectively, were 1.0 (2.2), 6.7 (7.0), and 13.9 (7.7).
Additionally, according to a 2022 report from The National Council on Disability, nearly 4.5 million of the 7.3 million persons in America with intellectual and developmental disabilities rely on Medicaid for health insurance. The National Council on Disability found that Medicaid does not consistently give adults with I/DD dental care, and that twelve states, with the exception of seven states that have restricted waiver programs, do not provide basic dental benefits.
Other caregivers have noted the difficulty in connecting with the correct providers. Jamie Hart looks after her sister, a 61-year-old former nurse living with younger-onset Alzheimer’s. She also cared for her elderly parents, who were nearing the end of their life. Hart stated that she sometimes spends hours pleading with people on the phone, attempting to get help.
I grew up in Franklin County Massachusetts. There are very few resources for disabled people and their families in this region. At 18, my mother became my PCA which helped supplement her income. Massachusetts does not allow parents of minor children to be paid for the care they provide.
Caring for a loved one is not uncommon. In 2020, AARP found that more than one-fifth of Americans (21.3 percent) now provide care. having cared for an adult or child with disabilities in the previous 12 months. Caregiving can also impact finances. A report from AARP titled Caregiving Can Be Costly — Even Financially shows that family caregivers spend more than $7,000 a year on expenses related to caregiving.
The cost of caregiving is exceptionally high, both monetarily and otherwise. Caregivers allow millions of disabled and elderly people to live in their communities. Family caregivers need support to provide vital care to their loved ones.
Sources:
AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. https://doi.org/10.26419/ppi.00103.001
“Become a PCA Today.” Personal Care Attendant Workforce Council, The Commonwealth of Massachusetts, https://www.mass.gov/service-details/become-a-pca-today.
Lannan, Katie. “Unpaid Caregivers Urge Healey to Get More Support to Families.” WGBH, WGBH Educational Foundation, 7 Apr. 2023, https://www.wgbh.org/news/politics/2023/04/07/unpaid-caregivers-urge-healey-to-get-more-support-to-families.
“Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities – a Fiscal Analysis.” The National Council on Disability, The National Council on Disability, 9 Mar. 2022, https://ncd.gov/publications/2022/medicaid-oral-health-coverage-adults-IDD.
Morgan, John P et al. “The oral health status of 4,732 adults with intellectual and developmental disabilities.” Journal of the American Dental Association (1939) vol. 143,8 (2012): 838-46. doi:10.14219/jada.archive.2012.0288