By Guest Bloggers Sean Coffey & Tyler Stanley, J.D., Policy Specialists at Family Caregiver Alliance
Staff from our organization, Family Caregiver Alliance, speak with family caregivers every day through our national information and referral hotline. These caregivers are often facing enormous financial difficulties. For example, adult children who are caring for parents with Alzheimer’s, especially in its advanced stages, find that keeping a job and being a caregiver is nearly impossible. The same goes for caregivers of a loved one with multiple conditions, those who are undergoing treatment like chemotherapy or those who simply needs assistance with multiple daily activities like eating, dressing and showering.
In addition to reduced income, many caregivers also take on more expenses, including co-pays, buying medical equipment or paying for supportive services like respite or direct care workers. Professor Richard Kaplan captured it best in his analysis of CLASS when he said that while family caregivers provide care “without charge,” this is not the same as “without cost.”
At a Congressional hearing held in March on the topic of CLASS, a witness shared the story of his co-worker to demonstrate how the current system of long-term supports (provided through Medicaid) can sometimes fall flat because of increased demand and tightened state budgets. One of his co-workers received a letter from the state of New Jersey addressed to her mom. The letter informed her that she had moved to #176 on the waiting list for a Medicaid Home and Community-Based Service. Unfortunately, she received the letter a week after her mom passed away. This woman’s situation is not an isolated incident – the Kaiser Commission on Medicaid and the Uninsured noted in a February report that there were 107,563 people on waiting lists for Medicaid Aged and Aged/Disabled Waivers in 2009, with an average wait time of six months.
Read complete article HERE.