With its oldest residents increasing in number at a rate far faster than the rest of its population, Pennsylvania has not one but two studies taking place on improvements needed to boost their access to long-term care.
Gov. Tom Corbett created the 25-member Pennsylvania Long-Term Care Commission, which held its first meeting this month, to prepare a report by year's end covering issues, problems, regulations and legislation relating to care options for frail older adults and younger ones with disabilities.
The commission's work begins as an advisory committee to the state House, in tandem with the Legislature's bipartisan Joint State Government Commission, nears completion of its own study addressing many of the same concerns affecting older Pennsylvanians. It recently completed a round of informational hearings around the state and is to release findings and recommendations by July.
By the time both panels complete their work, dozens of Cabinet secretaries, lawmakers, health care providers, senior advocates, medical professionals, consumers and operators of nursing homes, personal care homes, home care services and others will have been part of the review.
The panels are tasked with tweaking a system that the average Pennsylvania family suddenly finds confusing to navigate when its members are faced with frailties. People with a loved one who has daily care needs frequently don't understand the options available for housing or in-home assistance, what they cost, whether government helps pay for it and who to turn to for advice.
Such questions only increasingly arise in a state where, as the governor's Jan. 31 executive order creating his commission noted, the number of people over age 85 is expected to grow 42 percent over the next decade while its overall population grows 2 percent. Pennsylvania has more than 300,000 of those oldest-old adults now, representing a large part of $4.7 billion in annual Medicaid spending for long-term care services in the state.
"In the end, both commissions are trying to answer the same question: How do you provide care for the frail elderly in Pennsylvania in a way that is the most cost-effective with state dollars?" said Stuart Shapiro, president of the Pennsylvania Health Care Association, which represents many for-profit nursing home, assisted living and personal care home operators.
The range of government agencies involved at county, state and federal levels only adds complications. And private providers such as hospitals, nursing homes and home health care agencies work with separate sets of business motives, government regulations and financial realities that can further dizzy a well-intended son or daughter of a parent in serious decline.
Rep. Michele Brooks, R-Mercer County, sponsor of last year's House resolution that created that chamber's study, said she was motivated by the concerns of families in her district unable to get help understanding options and resources.
"Your 80-year-old parent or grandparent who breaks a hip needs home care, and where do you go? Who do you talk to about it? It shouldn't take you 20 calls to get that information, and then find out three months later you missed something," Ms. Brooks said.
One repeated theme she and others have heard is the difficult transition for frail adults between leaving the hospital after treatment and then accessing or paying for in-home assistance or short-term stays elsewhere. Families are confronted with an array of rules that guide funding and access through Medicare, Medicaid, private insurers, the state's Options program for older adults and the providers themselves.
The statewide system of Area Agencies on Aging exists as one referral point, though the actual services they help arrange have income guidelines. Public awareness of the agencies' existence and programs is often lacking and consumer satisfaction with them varies among the 52 such agencies.
Mildred Morrison, Allegheny County's AAA administrator and a member of the House panel known as the Advisory Committee on Long-Term Care Supports and Services, said a major problem is the typical family does little advance planning of what kind of care services its elderly members may need.
So people are jarred, she said, when they discover Medicare or Social Security won't pay for housing or services they assumed were covered.
"It becomes a crisis for many people," Ms. Morrison said. "If you're in the middle of trying to care for someone with a huge set of needs you haven't dealt with before, that's a difficult time for a person to try to fill out paperwork and figure things out."
Discussion and prior study has taken place for years in Pennsylvania through different gubernatorial administrations about the state's balance of spending on nursing homes vs. in-home care, which has tilted more toward institutions than is the case in other states.
"I've sat on commissions like this for decades -- through three different governors -- and it's been the same issues, only they're growing worse," said Timothy W. Coughlin, an Erie-based operator of assisted living facilities who sits on the House advisory committee.
Pennsylvania also has a decision to make about whether to adopt, as many other states have, a managed-care system covering long-term care for its Medicaid beneficiaries. A state-contracted organization would take on responsibility for arranging and paying for an individual's home assistance or institutional needs, which some think would provide better coordination and cost-effectiveness.
Those involved in the governor's commission say it won't be in competition with the House study -- the two panels have some of the same members on both -- and will benefit from knowing the research and recommendations of the latter's report a few months from now.
It is unlikely that either study will recommend large new expenditures of state dollars, as there is no indication such funds would be available.
"The funding issue is like the 800-pound gorilla in the room," largely undiscussed when the governor's commission held its first meeting, said Lawrence M. Clark, senior vice president of the LeadingAge Pa nonprofit provider group, and a participant in both government studies.
"The way the governor proposed the commission, and the way [the secretaries of public welfare and aging] are approaching it, they don't want to focus on funding -- they want to hear creativity and ideas to make the system better ... and then perhaps look at funding."
Gary Rotstein: firstname.lastname@example.org or 412-263-1255.