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An Interview with Jill Kagan

Jill Kagan, is the Chair of the National Respite Coalition and the Program Director for ARCH National Respite Network and Resource Center.  She joined the ARCH program as a consultant in 1992. Her principle objective was to help raise awareness of the value of respite and crisis nursery care to policy makers in Washington DC. This work culminated with the passage of the Lifespan Respite Care Act which was signed into law in December of 2006. When funds were finally appropriated to implement the Act, a grant was awarded to ARCH in partnership with the Family Caregiver Alliance to administer the Technical Assistance Centers for Caregiver Programs and Lifespan Respite. This joint effort ended in August 2012.   In September 2012, ARCH entered into a new cooperative agreement with the US Administration for Community Living/Administration on Aging to form a new Lifespan Respite Technical Assistance Center to provide training and technical assistance to Lifespan Respite grantees and their partners to implement coordinated respite care programs in their respective states. A list of these states can be found in the column on the right. Jill became ARCH director in 2009. ARCH continues as a division of CHTOP, Inc.

Gary Barg: Jill, tell me what an ARCH National Respite Network and Resource Center is and why respite is so important to family caregivers.
 
Jill Kagan:   First of all, we believe respite is so important to family caregivers because of the tremendous work they are constantly doing, as ongoing caregivers. Many of them, as you know, work 24/7 and often do not even have the opportunity to go to church, to take care of themselves by going to their own physician, doing things that they enjoy doing so that they can continue to provide that care to their loved ones. ARCH has been around since the early 1990s to help educate the public and policymakers about the importance of respite and why it is so central to their well-being and their quality of life. We are currently providing training and technical assistance to State Lifespan Respite Programs, which are federally-funded systems of coordinated respite services. We hope it will make it easier for family caregivers to access the respite that they need.
 
Gary Barg:   When we say respite, it is one of those wonderful words that are so important to family caregivers; but what is entailed? What do you consider appropriate respite family care?
 
Jill Kagan:   We consider appropriate respite to be anything the family caregiver says they need to get that break. Technically, it is a short break from care, a temporary reprieve or time of relief. It should be absolutely what the family caregiver says it is—the time that they need to center themselves and get rested and rejuvenated.
 
Gary Barg:   Which is as important for the loved ones for whom they care as it is for the caregiver.
 
Jill Kagan:   Absolutely. We also want that respite to be meaningful to the recipient so they are having an enjoyable, meaningful and sometimes even therapeutic time away. If the family caregiver does not feel as though the care recipient is having a good time and enjoying their respite and at least being in a well-cared-for environment, it is not going to be respite for the family caregiver either. So it has to be meaningful for all involved.
 
Gary Barg:   A lot of times, the value proposition of adult day services is that when your loved one is in adult day and is cared for and nurtured and energized, you need to take that time and do something for you.