Ray's Round Up: Supporting Family Caregivers – Where Do We Go From Here?

One of the difficulties of discussing, debating, and advocating about issues in Harrisburg is the difficulty of making the concern you’re working on sound new and fresh to policymakers.  Long-term care may be the prime example of this – the impact of long-term care on individual Pennsylvania families who are faced with dealing with a loved one in need of long-term care is tremendous, and the impact on the Commonwealth’s budget, and ultimately on the state’s taxpayers, is also large and growing each year.

Policymakers have been there and done that.  It is well documented that Pennsylvanians in need of help with basic activities like dressing and bathing, would prefer to get that help at home as well as stay in their communities as long as possible.  However, policy makers also know that some older Pennsylvanians cannot stay at home because of their health or because they are unable to identify the right kind of assistance needed to help them to do.  Thus, they live in a nursing home, where because of the expense of 24-hour care, they often exhaust their assets and become dependent on taxpayers to pay for their care.

The perplexing public policy problem is, “What can be done to reduce the costs to taxpayers by providing more care at home - without jeopardizing the health of the most frail?”

Many different approaches to this dilemma have been suggested, and in some cases, implemented.  But even with an aging population and growing need for long-term care, these efforts have become somewhat stale.  A few years ago, advocates adopted a new approach to Caregiving. In addition to focusing on the individual in need of care, more attention would be paid to the individuals taking care of their fathers, mothers, spouses, and siblings.

This refocus resulted in a change of tone during discussions among policymakers and during the enactment of new laws to help support family caregivers.  A centerpiece of this activity has resulted in more than 35 states, including Pennsylvania, passing legislation to implement the CARE Act.

The question now is, “Where do we go from here?”

Pennsylvania has a new law to help family caregivers, but it is only a small piece in the largely complex puzzle that comprises long-term care in Pennsylvania.  The CARE Act addresses concerns of family caregivers when a loved one is discharged from a hospital, but family caregivers have other issues of concern. Many issues arise from the stress of trying to juggle caregiving responsibilities with other day-to-day activities such as work or raising children.

A key factor in advocating for family caregivers and those receiving care is not to lose the momentum gained through the passage of the CARE Act.  This week AARP Pennsylvania partnered with SEIU Healthcare of Pennsylvania to co-host a forum focusing on family caregiving and the workers who provide long-term care services.  The forum featured two panels – the first consisted of advocates for those needing care, as well as both paid and unpaid family caregivers.  As the panel discussed their personal experiences of providing care and assisting those who provide care, they also provided an overview of why caregiving should remain an important issue.

The second panel discussed the what is next for Caregiving advocacy. With policymakers such as Pennsylvania Secretary of Aging Theresa Osborne, Pennsylvania Secretary of Human Services Ted Dallas, and Erin Raub, Executive Director of the Pennsylvania House Aging and Older Adult Services Committee,the future of supports for those who provide care to older Pennsylvanians was a main topic of discussion.

Ideas on how to build on the progress of the Commonwealth were shared and debated, but the most important result of this panel discussion was the passion and commitment these decision-makers showed toward the goal of helping keep more older Pennsylvanians at home and in their communities.     Focus on policies involving innovations in tele-medicine are of particular interest for long distance caregivers, while ensuring that caregivers get some respite from their caregiving duties are two areas that could make a large impact on Caregivers.

Another panelist, Carol Rodat, the Policy Director of the Paraprofessional Healthcare Institute, emphasized that advocates can never be satisfied – small victories should lead to greater victories, which lead to even greater victories.  In the area of supporting family caregivers, Pennsylvania has achieved that first victory and has reinvigorated the debate about the future of long-term care services and supports.  We have nowhere to go except forward towards a better system.

 

“Ray’s Round Up” features updates on current state and federal issues by Ray Landis, AARP PA’s Advocacy Manager.