Improving Chronic Illness Care

As family caregivers we instinctively know that our loved ones need a different kind of medical care than those who do not have a chronic illness or disability. More coordination between their various doctors is necessary. We also know that social supports are as important as medical ones.

During the past year there has been an unprecedented number of activities focused on these issues, many of them organized by the medical community. NFCA is proud to have been invited to participate in them, often as the sole representative of the family caregiver community. Having our voice heard in these forums is both an opportunity for NFCA to influence the thinking and policies of others, and to learn more about the issues from the vantage point of other thought-leaders. It is a statement of the growing awareness of the role of family caregivers in providing healthcare services and recognition of the fact that family caregivers need to have a say in the solution to our current healthcare problems.

The Health Sector Assembly*

An organization originally formed under the umbrella of the American Medical Association, the Health Sector Assembly is a forum for the discussion of our nation's most significant healthcare issues. Invited attendees gathered for two days last fall in Sundance, UT, to hear about the causes and concerns of our current chronic care dilemma and to propose workable solutions that would ensure high quality care and education for patients and their families. Attendees included policy makers, advocates, healthcare professionals, pharmaceutical executives, members of the clergy, and others.

The National Chronic Care Consortium*

In March, the National Chronic Care Consortium (NCCC) hosted a working conference, entitled, "Beyond Talk: A Working Session on Regulatory Reform," which focused on regulatory reform of Medicare and Medicaid to bring about better care for the chronically ill. NFCA's president Suzanne Mintz served on the planning committee for the conference and was also a panel participant. Her comments addressed the role of family caregivers in healthcare and the lack of support family caregivers receive.

Center for Medicare Advocacy*

Following on the heels of the NCCC conference in March, the Center for Medicare Advocacy hosted a working conference in Washington, DC to develop the outline and principles of A Care Coordination Benefit in the Fee-based Medicare Program. Again attendees included thought-leaders from a variety of communities, including Marilyn Moon, PhD, the nation's leading public policy expert on Medicare. The Center's staff is now widely distributing the document and developing a strategy for introducing legislation in Congress.

Secretary of the U.S. Department of Health and Human Services (HHS) Commission on Regulatory Reform*

Secretary Tommy Thompson created a department wide commission to hear public comments on how services could be improved via regulatory reform. Regulatory reform falls under the jurisdiction of the Secretary and does not require legislation or Congressional approval for implementation. A series of four panels were held across the country and representatives of various constituencies were invited to present testimony or make public comment. NFCA was approached by Centers for Medicare and Medicaid Services (CMS) to determine whether any caregiver issues could be addressed by regulatory reform. When given an emphatic "yes," NFCA was invited to have a representative speak before the Commission during its Denver session on May 16th. Family caregiver Eileen Brown-Jacobs presented the case for Medicare reform on behalf of NFCA by talking about the inability of doctors to consult and support family caregivers and coordinate their loved one's care and medication management due to the current inadequate Medicare fee schedule for physician reimbursement. Supporting Mrs. Brown-Jacobs in her testimony, and also presenting his own, was Alan Lazaroff, MD, a noted geriatrician with the Centura Health System in Denver and a respected advocate for Medicare reform.

Legislation to Watch...

Lifespan Respite Care Act of 2002 (S.2489.IS) As you may know, NFCA is a member of the Lifespan Respite Task Force, a coalition of organizations working to enact national lifespan respite legislation. Modeled on programs already existing in Oregon, Nebraska, and Wisconsin. The Task Force worked closely with Senator Hillary Clinton's office to write legislation. At a press conference on Capitol Hill on May 16th, with NFCA representatives present, Senator Clinton (D-NY), Senator Olympia Snowe (R-ME), Senator John Breaux (D-LA) and Senator Barbara Mikulski (D-MD) publicly announced the new initiative. The Lifespan Respite Bill calls for the creation of both national and state-based, one-stop-shop offices to coordinate respite care resources and assist family caregivers in getting the respite services they need.

Medicare Chronic Care Improvement Act of 2001 (S.1589.IS) and (H.R. 3188.IH)

In October, Sen. Jay Rockefeller (D-WVA) and Congressman Pete Stark (D-CA) introduced legislation that was developed in conjunction with the National Chronic Care Consortium of which NFCA is an active member. The legislation's purpose is to bring about some of the changes discussed at the various chronic care forums noted above including simplification of medical paperwork requirements and complete patient assessments and education for both patients and family caregivers. Although services for family caregivers are not the primary feature of the bill, they are only there at all because of NFCA's efforts.

The National Family Caregiver Support Program

Enacted in 2000, the National Family Caregiver Support Program continues to get attention on Capitol Hill. Senator Barbara Mikulski (D-MD) chairperson of the subcommittee on Aging of the powerful Health, Education, Labor and Pensions Committee held an oversight hearing on May 14th to find out just how the new program is fairing, what problems exist and what successes have been realized. Barbara McSweeney, a NFCA member from Washington, D.C., who is receiving respite care services through the program, presented the viewpoint of family caregivers. Additional testimony was provided by Josephina Carbonell, the Assistant Secretary for Aging, Sue Ward, Secretary for Aging (MD), and John Skirven, Executive Director, Senior Services of Southeastern Virginia.

Legislation Previously Introduced...

Several bills of direct interest to family caregivers introduced a while ago, are not receiving active attention at this time. These include:

The Retirement Security Act of (S.627.IS) and (H.R.831.IH)

This bill provides for a $3000 tax credit for caregiving families in recognition of the high out of pocket costs that come with caregiving. The tax credit would be phased in over four years. Although small, it is the first recognition of the financial needs of caregiving families and so its importance is greater than the actual dollars provided.

The Family Caregiver Safety and Well-being Act

Although not currently before Congress, the Family Caregiver Safety and Well-being Act will hopefully be reintroduced. It directs Medicare to pay for upgraded equipment that is medically necessary if the upgrade is beneficial to the caregiver's well being. Examples of such upgrades are lightweight folding wheelchairs or fully powered beds.

To read either a summary or the entire text of these and all other bills before Congress, log onto http://thomas.loc.gov/.