I’ve readily admitted that I’m no political expert. Nevertheless, I’ve remained puzzled as to why elder care issues are not at the forefront of presidential campaign debates. By 2030, more than 20 percent of Americans will be 65 or older and nearly half the U.S. workforce expects to be providing elder care within five years. There is a growing caregiver crisis in America: In short order, there will be more people in need of care than there will be people available to provide it.
People with disabilities who receive government assistance or subsidies are already suffering because of poor public policy with regard to caregiving. As highlighted in this impressive recent New York Times story by Katie Thomas, Sheri Fink, and Mitch Smith, there are likely hundreds of thousands of Medicaid patients who have been confined to nursing homes that don’t require round the clock assistance or care. Although there is growing evidence that allowing disabled patients to remain in their homes is cheaper than nursing home care and allows for better outcomes, Medicaid offers limited caregiving reimbursements.
Confining people to nursing homes that don’t require institutional care is illegal. The Supreme Court ruled nearly two decades ago that disabled people requiring public support were entitled to live in their communities unless it is medically necessary to commit them to an institution. To its credit, the Obama Administration has opened more than 50 investigations of wrongful nursing home confinement and has already reached settlements with eight states. The Justice Department recently issued a scathing report about wrongful confinement practices of South Dakota, which the AARP ranks among the most egregious in the country.
The Times did an admirable job capturing the horrific conditions of disabled people confined to nursing homes that don’t need to be there. Individuals like Marvin Dawkins, a former AT&T manager who was paralyzed and committed to a nursing home for 11 years because of bureaucratic red tape and other issues. Dawkins now lives in an apartment, has a job, socializes with friends, and leads a life that gives him meaning.
“I determine what happens to me,” Dawkins told the Times. “I was there at the nursing home basically just laying in bed and watching TV. I didn’t think it was much of an existence.”
At CareLinx, we are partnering with several leading health systems to study how experienced home care professionals can be utilized to support patients in their homes post-discharge if their doctor thinks they can safely rehabilitate at home with the support of caregivers rather than sending these patients unnecessarily to a skilled nursing facility. It is my hope the data we are capturing will ultimately impact the discharge planning process where patients can be safely sent home with professional caregivers so that they can continue to live a life filled with grace, dignity and purpose.
Still, it’s still likely going to take continued government intervention to get many state programs on board and the heroic efforts of regulators like Eve Hill, a deputy assistant attorney general in the Justice Department’s civil rights division. Hill has spent her entire career advocating for disability rights since graduating from Cornell Law School more than two decades ago. It’s an impressive record of pubic service, and I wish her continued success.