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Empty Promises
Maine’s Looming Elder Care Crisis
 
FORWARD
 
     Like the gold miners who forged their way across this nation, opening up new frontiers, the Baby Boomers are doing the same in the field of eldercare.  Our long-term care system is truly broken and the determination to stay home -- rather than face institutionalization -- has become this generation’s mantra.  Instead of “California or bust!,” their motto is fast becoming “Home or bust!,” as they opt to be number 30,000 on a waiting list for home care rather than go into a nursing home.
 
     As a pioneer in this field myself, I have observed many well-intended efforts to care for elders result in a disarray of regulation and laws that create inadequate and constricted options for seniors.  I have also been the subject of illogical regulation and enforcement that has only served to damage my clients.  This paper provides an overview of how we came to be in this untenable situation – in which seniors do not have adequate supports to stay at home or to find a suitable home-like option -- as well as a roadmap for a way out of this quandary.
 
     I would like to thank Rebekah Smith for her concise compilation of decades of research and experimentation regarding better housing and care for the elderly.  As we prepare to distribute this report, I have just returned from the International Conference on Aging, Disability and Independence, which represented the current research on this topic from around the world.  It substantiated and validated the research that I have been doing and that Rebekah has set forth here.  Following are excerpts from some of the papers presented by leading experts from around the country:
 
  •  “A patchwork of federal, state and local policies, regulations, standards and codes…can be barriers to innovation.”  U.S. Dept. of Commerce, Technology and Innovation in an Emerging Senior/Boomer Marketplace (Dec. 2005).
 
  • “Small community group homes appear to be emerging as the preferred mode of out-of-home care…”  Dr. Matthew Janicki, Adapting Group Homes for Dementia Care, University of Illinois at Chicago (2006).
 
  • “Perhaps the most detrimental effect of the traditional culture of long-term care, and the fact of institutional life that drives the movement for change the most, is how meaningless people’s lives can become in the traditional nursing home.  Any systemic attempts at culture change must therefore address the issue of teaching the requisite skills that insure cultural competency in the new order and thus add meaning to people’s lives.”  Audrey S. Weiner & Judah L. Ronch, Culture Change in Long-Term Care xiv (2003).
 
  • “We should each look at our own self in the mirror and ask a straightforward question relative to the nursing home with which we are connected: ‘Would I like to spend the last days of my life in this nursing home?’  If not, there is something terribly wrong with the situation.”  Douglas Holmes & Mildred Ramirez, Models for Individuals with Alzheimer Disease: Beyond the Special Care Framework, reprinted in Weiner & Ronch at 175.
 
     This paper combines the available research with my own experience providing housing with services to seniors in hopes of stimulating a significant change in the delivery of  elder care in Maine.  Without such a change, we are heading for disaster.
 
- Joanne Miller, LSW, CMC, CSA - Administrator, ASK…for Home Care - President, Homeshare, Inc. – Member, Gov. Brennan’s Small Business Advisory Council & Gov. McKernan’s Human Resource Development Council
 
 
EXECUTIVE SUMMARY
 
     As the landscape for long-term care in our nation has shifted dramatically in the past decade due to changes in elders’ desires and new Supreme Court precedent on the Americans with Disabilities Act (“ADA”), Maine’s regulatory system for elder services and housing has not kept pace. Maine seniors continue to face a dearth of options when seeking services and housing as they age.  This policy brief serves to explain the coalescence of circumstances that requires Maine to forge substantial changes in our elder care policies.  Some key points are highlighted in this executive summary.
 
National research reveals a problem of epidemic proportions:
 
  • In 2002, 12.4% of Americans were 65 years old or older; by 2020, this figure will approach 20%, and 44% of those seniors will be aged 75 or older.  As the numbers of elderly who need long-term care grows, the demand for services is expanding rapidly.
 
  • Amazingly, more than 90% of disabled elders living in the community get their everyday care from unpaid family caregivers.  Over 27 million individuals provided uncompensated care in 1997, for a value of $196 billion in services.
 
  • Despite the vast amount of unpaid care our elders receive, the unnecessary and illegal institutionalization of seniors remains a serious and pervasive problem.
 
  • Assisted living homes, which provide a level of care between independence and nursing homes, have grown increasingly popular.  They are not accessible to the vast majority of elders, however, due to cost.
 
Medicaid policies perpetuate the unnecessary and illegal institutionalization of our nation’s elders:
 
  • Ironically, although Medicaid is the single largest payer of long-term care in the nation, financing 40% of all long-term care spending of $150 billion in 1998, it remains heavily tilted toward the most expensive forms of institutionalized care. 
 
  • Medicaid continues the illogical policy of covering the costs of room and board in a nursing home but in no other setting.
 
  • About 1 million (77%) nursing home residents received Medicaid funding assistance in 1999.  Thus, institutions that are often financially feasible only if Medicaid funding is limited to 50% of residents face enormous financial pressures on the institutions as well as Medicaid budgets.
 
  • For the cost of 2 beds a day in a nursing facility, 5 elders would be fully supported in their communities.  “People would rather be No. 30,000 on a list for community care than go into a nursing home.”  Barbara Basler, Suing the World to Get Out, AARP Bulletin 3 (June 2004).
 
  • Although Medicaid-funded home and community-based services are available in some states, the national Commission on Affordable Housing recognized that “[h]ome and community-based services under Medicaid are an empty promise if people who meet the eligibility criteria cannot afford to stay in their own homes.” Commission on Affordable Housing and Health Facility Needs for Seniors in the 21 Century, A Quiet Crisis in America, Recommendations 40 (2002).
 
Other government policies also thwart efforts to enforce seniors’ legal rights:
 
  • In 1999, the United States Supreme Court issued the landmark decision of Olmstead v. L.C., 527 U.S. 581 (1999), which held that the institutionalization of disabled individuals who could receive care in a community setting was a violation of the ADA.   Implementation of Olmstead continues to be sluggish and haphazard.
 
  • Despite the effort that has been put into evaluating the needs and desires of aging seniors, government policy continues to stagnate and thwart seniors from realizing the outcomes they seek.
 
  • The national Commission on Affordable Housing concluded that current elder care programs are “an accumulation of unrelated decisions and unintended consequences.”
  • Noting the fundamental disconnect between elder services and housing, the Commission on Affordable Housing discovered that government regulation not only prohibited the integration and coordination of senior housing and medical care, but also led to premature institutionalization.
 
  • In response to Supreme Court mandates that states may not compile waiting lists for services, some states have simply eliminated waiting lists for elders in need of community-based services in order to remove the pressure from government officials to ask for additional funding to expedite services.  Other states illegally impose limits on the number of clients eligible for Medicaid.
 
Our philosophy of elder care must be altered:
 
  • In view of the unprecedented growth in the proportion of the population who are seniors, the United States “has both a moral obligation and a financial imperative to establish a more rational long-term care system.”  Commission on Affordable Housing.
 
  • The United States must “embrace consumer choice and tailor programs to fit individual needs.  Americans must think residential, not institutional.”  Commission on Affordable Housing.
 
  • The looming crisis is “a community crisis, a State problem, and a national concern – without a simple answer, without a single solution.”  Commission on Affordable Housing.
 
  • A social model of care, which provides more independence and individualization of care, should be employed to expand choices and opportunities for seniors.
 
  • Minnesota, leading the way on this issue, has created a sensible and simplified system of regulation of elder care that should serve as a model for other states.
 
In Maine, change is desperately needed:
 
  • The Work Group for Community-Based Living concluded that Maine’s laws and rules regarding assisted living were confusing and cumbersome.
 
  • Maine focus group participants who lived in residential care facilities reported isolation, helplessness, and displacement.
 
  • Although Governor Baldacci’s policies are consistent with an improved model of elder care, his goals are not reflected in Maine’s policies.
 
  • Maine seniors lack options when faced with the need for housing and services and this problem will continue to grow exponentially.
 
     Cost considerations, legal requirements, and a moral imperative to respect our aging seniors require national and state policymakers to rethink our systems of elder housing and services.