You Can Effect Change

Here is an explanation of proposed legislation, and a discussion of public policy issues that directly affect family caregivers, with recommendations on how you, with just a small amount of effort, can help bring about needed changes.

Current Legislative Initiatives

• The Lifespan Respite Care Act of 2003 (S538)

  The Senate-passed Lifespan Respite Care Act would authorize $90 million in competitive grants to states and other eligible entities to make respite available and accessible to family caregivers, regardless of age or disability. The bill would help support planned and emergency respite, respite worker training and recruitment, family caregiver training, and program evaluation.

  The bill has already passed the Senate and now sponsors are being sought in the House of Representatives. It is especially important that the House Energy and Commerce Committee act on the bill. Ask your congressman to encourage his/her colleagues on this committee to "discharge the Senate bill" in a timely manner.

• Family Caregiver Relief Act of 2003 (S1214)

  This bill, introduced by Sen. Barbara Mikulski (D-MD), would provide up to a $5,000 tax credit for caregiving families to help defray the costs of caregiving. It is a very real recognition of the fact that many items and services needed for caregiving are not covered by insurance and that these expenses are more than caregiving families should have to pay. More sponsors are needed, so ask your senators to support this legislation. It is easy to explain the financial burdens of family caregiving. For instance, one study showed that families in which one person is disabled have 2.5 times higher out-of-pocket medical expenses than the average American family, more than 11 percent of income.

  Both of these bills are examples of legislation that will directly assist family caregivers. That's why it is so important for family caregivers to take a stand in their support. If we don't, who will?

  It's easy to find out the name and contact information for your senators and representative. Go online to: www.congress.org and simply type in your zip code.

  The Need to Reform Medicare

  Every year members of Congress and the administration talk about Medicare reform. For the most part they are talking about adding a prescription drug benefit. No one argues that a prescription drug benefit is needed, but there are other, more fundamental, flaws in Medicare that must be addressed if it is going to be responsive to the needs of caregiving families. Here are some things for you to think about as you ponder where to make your stand in support of all caregiving families:

• Doctor/Caregiver Communication and Coordination

  Would you be surprised to learn that doctors are not supposed to talk with family caregivers without our loved ones being present? Would you be surprised to learn that doctors aren't even paid to spend time counseling and talking with our loved ones or coordinating with other doctors regarding treatment and medications? It sounds crazy, doesn't it? But it is true. Doctors get paid for putting someone in the hospital, or fixing a problem once it has arisen, but not for working to prevent that problem from happening in the first place. Changing the rules and regulations that cause these irrational situations to arise is part of what Medicare reform needs to be about.

  NFCA believes very strongly that care coordination services should be compensated by Medicare, especially when provided for persons with multiple chronic conditions. Such a change would compensate doctors for talking to each other about our loved one's situation, and for talking with us as well. It would put in place the use of an electronic record so that everyone is dealing with the same informationÑand we wouldn't have to fill out form after form every time we go to a different doctor.

• Caregiver Assessment and Education

  Wouldn't it be nice if discharge planners actually were charged with finding out how easy or difficult it would be for us to care for our loved one at home? Wouldn't it be nice if there were home visits by a nurse or other qualified person to make sure things were going well? Wouldn't it be nice if we were really trained and educated about our loved one's condition and how to use needed equipment? Wouldn't it be nice if we had a person to call when we couldn't figure things out on our own? If you said yes to each of these suggestions, then you are interested in Medicare mandating that people not be sent home until a proper assessment of the family's ability to care and the home environment's ability to support the "patient" was conducted and family caregivers were trained in the art of caregiving and the use of equipment and supplies.

  These and other public policy-related issues will be explored more fully in future issues of TAKE CARE! The more we know about how public policy affects our day-to-day lives, the better position we will all be in to try to change the policies we don't agree with and implement new ones that will make life safer, easier, and more responsive to the needs of caregiving familiesÑincluding your own.