Home-care crisis caused by Congress, public attitudes, glacial slowness

Home-care crisis caused by Congress, public attitudes, glacial slowness

Home care task force offers solutions

Today's home-care crisis is not a result of Gov. O'Bannon or the General Assembly doing the wrong thing. It's the result of their inability or lack of will to do enough of the right thing.

In 1997 Congress passed, and President Clinton signed, the federal Balanced Budget Act, which was intended to address overspending by the national government. But Congress, in its temporary zeal to cut federal spending, made drastic cuts in the services that people could receive in their homes through Medicare.

Those cuts have caused millions of senior citizens throughout the nation, and tens of thousands in Indiana, to lose their home-care services. Predictably, many of those people did not have the financial resources to replace the home care that Congress took away through the Medicare program. Furthermore, the home-care crisis has been made worse because the 1997 act also forced hundreds of home-care providers in Indiana out of business.

Add to this mix a rapidly growing awareness by the public that people with significant disabilities generally do better if they are cared for at home, and the stage was set in Indiana by the late 1990s for a home-care crisis.

"Thirty years ago many people felt that the elderly generally went to nursing homes and that persons with severe disabilities died," said John Cardwell, CAC's Legislative and Program Director. "Today, more people realize that personal care and new technologies are rapidly changing and/or eliminating the role of the traditional nursing home. Elderly people and persons of all ages with significant impairments can continue to thrive at home and in the community with the right mix of supports. That also means people are no longer willing to be shoved into nursing homes, or to have their family members locked away."

Unfortunately, the Indiana General Assembly and the O'Bannon administration have not reacted to the federal Balanced Budget Act and the positive changes in public attitudes as an opportunity to change Indiana's system of long-term care. Instead, the net reaction of the legislature and the governor has been to see these changes as financial burdens that must be approached very cautiously and with a minimal fiscal impact on established nursing home providers.

Consequently, the 2001 state budget, passed by the General Assembly and signed by the governor, budgeted nearly $1.8 billion for nursing homes through the Medicaid program over the next two years. As the budget was being prepared, a former O'Bannon administration official commented: "We're going to spend nearly $900 million a year for a form of long-term care that nobody wants?"

For advocates, such as CAC's Cardwell, the established budgeting habits of the state are highly frustrating. "Most legislators and the Governor clearly recognize the need for more home care and less institutional care." he said. "They also recognize that home care is far cheaper than care in a nursing home. However, they remain unwilling to direct public funding away from the nursing home industry into home- and community-based care, or to make a parallel bubble investment in home care in order to provide a real choice in long term care.

"Making such a choice available could eliminate the waiting lists and force nursing homes to provide consumer sensitive services. Until lawmakers are willing to do that, the nursing home industry will not reform itself, we will continue to waste taxpayer dollars, and more and more innocent Hoosiers will be forced into nursing homes and premature death. Yes, change is coming but the glacial slowness of the change continues to needlessly hurt all the citizens of our state."

Solutions Offered by the Task Force

On July 25, 2001 the Indiana Home Care Task Force held a press conference at the State House challenging Gov. O'Bannon and the General Assembly to respond to this long-term-care crisis, which has seen a 32 percent increase in the number of persons on waiting lists for home care in Indiana since November 2000.

In that press conference Cardwell stated: "Clearly, with increases of this magnitude, the state can no longer say it is effectively addressing the long-term care needs of the citizens of Indiana. With increases on this scale it is time for Gov. O'Bannon to ask the General Assembly to take action."

With many political leaders talking about the possibility of a special legislative session this fall, Cardwell added: "If a special session is called by the governor, then he must place the issue of home-care funding squarely before the legislature. Should that fail to happen, then the issue must be addressed by the legislature come January, when it meets for its regularly scheduled short session. Whatever the course, now is the time for a commitment by Gov. O'Bannon to publicly lead the General Assembly in fully funding the CHOICE and Medicaid waiver home-care programs."

Should the General Assembly adopt a funding package to address the home care waiting list crisis, that funding should be utilized to address the total spectrum of home- and community- based long term care needs, and the commitment should be ongoing. This approach has been discussed with Gov. O'Bannon on several occasions over the past four years, including a meeting between the governor, his senior staff, and Task Force leaders on July 10. The discussed solutions include the following proposals:

Budget/Funding Needs: The state needs to adopt a funding strategy that can aggressively pull down the number of people on waiting lists with the objective of reducing those lists to zero within three years.

This means providing the home- and community-based services that are needed for people trying to avoid institutions and those trying to leave them.

It means funding that can provide care to persons who are currently on waiting lists for the CHOICE program and existing Medicaid waivers for the aged and disabled, persons with developmental disabilities, medically fragile children, persons with autism, and persons with traumatic brain injury.

It also means bringing on line the new assisted living and adult foster care waivers, two services that have been inexcusably delayed by the state, and expanding adult day care per the mandates contained in House Enrolled Act 1197, which was enacted into law in 2000. The funding needs also include implementing a comprehensive system of quality assurance and consumer protections for persons using long term care in Indiana.

The bottom line is simple: our long-term care system should be funded in a comprehensive manner, and once a person is determined to be in need of long-term care services, those services should be provided within 45 days and in a manner that features consumer control, effective, and reliable care.

Human and infrastructure resource needs: Indiana's system of long-term care not only suffers from a lack of funding for services, it also suffers from a failure to invest in the people and systems that are needed to ensure the delivery of reliable and effective care. That must change.

The state must address the critical shortage of central office personnel in state agencies, housed within the Family and Social Services Administration, that are responsible for conducting programs such as CHOICE and the Medicaid waivers.

The State Budget Agency also lacks the ability to properly analyze and detail personnel to the human service sections of the state budget. It lacks the ability to work with FSSA in a programmatically positive and proactive context. At the local level, the Area Agencies on Aging are understaffed in terms of program and case management administration, case managers, and specialize intake personnel. Additionally, liaison personnel are needed to work with the mental health system, the independent living centers, private agencies, and consumer groups.

Cardwell said it's past time for Indiana politicians to tackle the problem head-on.

"CAC and the other members of the Indiana Home Care Task Force have worked patiently with the O'Bannon Administration and the General Assembly for years to address the home-care crisis in our state," he said. "The solutions are known. The time for action is now. For the people who are suffering and dying while waiting for help from the state of Indiana the wait has already been too long."

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