Three Decades of Caring: A Conversation with Caregiver Advocate Kathy Kelly

Aging Today, November/December 2010 | Go to article overview

Three Decades of Caring: A Conversation with Caregiver Advocate Kathy Kelly


Kathy Kelly has been working with caregivers since before there was such a term. In 1979, when she started at the Family Caregiver Alliance there were two staff members. That same year the current governor, Jerry Brown, signed the first piece of legislation recognizing caregivers as being of primary assistance to those with impairments - it was the first bill to outline a what is now a common system of care that included counseling, legal, financial and psychological advice.

In her three decades in the field, Kelly, now executive director of the Family Caregiver Alliance (FCA), has witnessed an increasing public awareness of families as the backbone of long-term care and assistance for older and disabled adults, the explosion of research in interventions for caregivers and the development of state and national caregiver support programs.

The Family Caregiver Alliance has been one of the leading organizations involved in advocacy, research, service and system development in the San Francisco Bay Area, throughout California with the development of the Caregiver Resource Center system, and now nationally as the National Center on Caregiving.

Aging Today spoke to Kelly about modern caregiving issues, in advance of a April 27 panel to be held during the 201 1 Aging in America Conference, April 26-30, where she'll be addressing "Caregivers as Partners in Care: Shifting the Paradigm Towards Consumer and Family-Centered Care."

Aging Today: The president of the AMA warned in November that when Medicare cuts of more than 20% in physician payments come in January (without congressional action to stop them), elders may lose access to care because more doctors will stop accepting Medicare. How might this affect the work of the Family Caregiver Alliance?

Kathy Kelly: These cuts are the latest installment of the 1997 Balanced Budget Act, and attempts to rein in spending on healthcare for elders. The American Medical Association is asking Congress to postpone these Medicare cuts until January 2012, giving doctors and lawmakers just over a year to work on a remedy.

While this postponement seems likely to happen, it brings up the issue of reimbursements to physicians - especially primary care physicians and geriatricians. Reimbursements need to be more attractive, so we can increase the numbers of professionals going into those practices.

Many of the models mat we expect to have demonstrated under the new Center for Medicare and Medicaid Innovation at the Centers for Medicare & Medicaid Services - models that address die issues of care coordination and transitional services - are based on coordination between a primary care physician, specialists, allied health professionals, community providers and family members. The goal is greater quality of care using a person and family-centered approach.

AT: What do you see as the biggest trend, or need, that America will face in caring for our elders? How might FCA address that trend?

KK: Right now we know that the typical primary caregiver is a woman in her late 40S or 50S - members of the baby boomer generation for the most part - who are caring for an aging parent. And a good percentage of these caregivers are juggling job and family responsibilities. This is different from when we first started; at that time our caregivers were older spouses. While adult children were involved with some care tasks, it was Mom or Dad who were providing the care, making die decisions, coordinating the medical appointments and so on.

We find that with adult children stepping into the primary caregiving role, far more negotiation is needed if multiple siblings are involved. The dynamics within the family have changed over the years wim this change in caregiving roles. We find a greater need for mediation skills now dian we had in the past.

The future will be interesting. There are more single individuals man ever before, and tiiose in civil unions or partnerships (depending on me state), too. …

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