March 29, 2007

Paying for and Providing Long Term Care in Pennsylvania

Thank you for the invitation to address the House Democratic Policy Caucus this afternoon on paying for and providing long term care in PA.

My name is Mary Anne Kelly. I have the honor of serving as the Executive Director of the Southwestern Pennsylvania Partnership for Aging (SWPPA), a 397 member aging and long term care education, policy development, networking and advocacy organization covering the following ten counties of Southwestern Pennsylvania: ~ Allegheny, Armstrong, Beaver, Butler, Fayette, Greene, Indiana, Lawrence, Washington and Westmoreland ~ a region containing 17.2 % of seniors aged 65 and over compared with the national average of 12.4 % and the PA average of 15.6 %, based on the 2005 U.S. Census update. Clearly, older adults and long term care issues are of great concern here in southwestern Pennsylvania.

I want to share that SWPPA has testified before to both Democratic and Republican PA House and Senate Committees, and in each testimony, we have sought to be thoughtful, representative of the views of our members, always focused on the best options for older adults, and diplomatic. Today,

I again want to be thoughtful and elder focused, but my former diplomacy may come out to be more brutally candid than diplomatic.

PA’s long term care system is BROKEN. Let me repeat that – PA’s long term care system is BROKEN. I do not say this lightly; in fact, I say it with sorrow.

How is the system broken? It is broken from multiple perspectives - from the vantage point of residential based services, whether nursing homes or personal care homes, and it is broken from the vantage point of home based services, whether the PDA Waiver or the Lottery-funded Options Program, which in turn includes a broad array of community based aging services such as assessment, case management, home health care, home care, adult day care, senior centers - and the list goes on.

Why do I say the long term care system in PA is broken?

From the perspective of older adults, far too many nursing homes are places where those living there – whether elders or younger persons with disabilities – are not given choices in daily human activities of living – such as when to rise and when to go to bed, what and what time to eat, and how and when to bathe. In short, many living in nursing homes are not respected or afforded a ‘real home’ in the truest sense of the word home. In personal care homes, far too many residents have aged in place, in need of more intense and clinically based services, only to continue to get the minimum level of services provided under newly changed but still outdated personal care home regulations and woefully absurd public reimbursements, largely because the state does not know what to ‘do’ with these residents. Suggest a move to a more costly nursing home, when the state’s Medicaid Program cannot afford further expansion? Seek community based options when the current aging service system excludes housing as a service under their purview?

Sadly the situation is really no different for elders living in the community receiving home based care. The PDA waiver program has been the only established aging program which has grown over the last several years yet that program’s net statewide expansion has been low in terms of total numbers of person served, and the only persons who are eligible for this program must be nursing facility clinically eligible and low income. In short, the PDA Waiver Program ignores those older adults who are on the slippery slide toward skilled nursing home eligibility; it likewise ignores elders who are not at the bottom rungs financially, including the large group of elders who are above the lowest of low income and those elders who are in the lower middle class tier.

What about the Options Program, you might ask? Despite the fact that the PA Lottery realized a whooping 16 % increase in sales in the 2005-06 fiscal year, with a new record of $3.07 billion sales, according to a July 31, 2006 Rendell Administration Press Release (see copy attached at the end of my comments), these commendable increases have not gone into expanding the Options Program, which provide an array of preventive services to older adults who are not yet skilled nursing home eligible and who can be of middle class means. Instead of expanding this home based programs, these Lottery Funds have gone to increasingly expanded PACE and PACENet coverage, substantively increasing property tax and rent rebate programs, and those of us working in the field of aging suspect, toward back-filling the Commonwealth’s Medicaid shortfall, freeing up the General Funds which had been meeting this need.

I am sure that your response to these criticisms may be something like – but the state is working on re-balancing long term care. (For those here today who may be less familiar with the term re-balancing long term care, re-balancing is the phrase used to describe the government's desire to reduce nursing home usage and significantly expand home-based services.)

SWPPA has no concern at all with the concept behind re-balancing. However, SWPPA does have two concerns about re-balancing as proposed in PA. The first concern is that the proposed re-balancing strategy and its corresponding policies are occurring without any discussion, let alone any meaningful discussion, with elders, caregivers or providers. Second, while Medicaid cuts have occurred for nursing facilities, there has been no parallel growth in home based service funding. In short, there is no balance in PA’s re-balancing long tern care proposal.

What then is SWPPA’s opinion – no, let me rather say - what then does SWPPA know?

The demand for all services -- from home based services to skilled nursing -- will continue to grow because of the aging of the 78 million strong Baby Boom generation, the first of whom will turn aged 65 in 2011, and the fact that people are living longer with more chronic conditions because of medical advances and the very pharmaceuticals that PA is funding so well today – and ignoring this reality is just plain short-sighted.

We also think debating nursing homes versus home based services is diverting and dividing. It is not an either/or proposition. All long term care services must be appropriately funded because elders deserve the services they need, when they need them, in the place they call home.

SWPPA would also like to address the often-cited, and correct, fact that PA’s Medicaid budget is strained. This budget is not strained just because of elder services, even thought that seems to be what state government wants us all to believe. Rather, it is strained because the overall number of Pennsylvanians needing any kind of long term care is growing, and those needing the care are sicker and require more costly services, and - please hear this - Medicaid has, over time in PA, become the de-facto funder of a broad, broad array of services and programs, including costly programs and services for persons with developmental and physical disabilities, families and children, and growing numbers of uninsured.

SWPPA is not saying that funding these other groups is wrong; we are rather saying that we need to acknowledge and make transparent all Medicaid funding to all human services – ranging from children’s services to mental health, developmental disability, physical disability and aging - so that Pennsylvanians really knows what they are paying for and that they can use this information to make value decisions for future funding.

I said earlier that SWPPA members include individuals and organizations. I would now like to add that SWPPA members include individuals and organizations with an interest in, and passion for, cost efficient, high quality supports and services to older adults. And, we feel that Pennsylvania needs to create a time limited, truly independent and truly inclusive commission which includes consumers of services, along with state legislative and administrative officials, advocates and providers, to discuss, accomplish and arrive at conclusions about the following three points:

• the actual cost of, and needed funding for, person-centered, consumer respectful, quality services, including our expectation of government support and the consumer's level of responsibility in funding their own long term care;

• engaging the public in a meaningful, understandable dialogue about what are the reasonable range and funding levels for Pennsylvania’s different human service system, and

• for elders, ascertaining the proper balance of residential and home based care.

Additionally, based on the varied experiences of SWPPA members, we feel that Pennsylvania needs to work on the following seven points for a new long term care service system in the Commonwealth:

• first, a shift from the old medical model of residential long term care to the more appealing and less costly person-centered AKA ‘culture change’ residential model for those seniors who cannot hold onto home

• second, explore the need for assisted living licensure and determine the role of assisted living versus personal care homes

• third, apply the principles and practice of person-centered care / culture change as a guidepost in home based, re-balanced long term care,

• fourth, add housing access and placement services within home based case management services

• fifth, require outreach to the increasing numbers of isolated, homebound older adults, often living with dementia and depression, and require that state and local mental health and aging collaborate to effectively treat these vulnerable older adults who often cannot help themselves

• sixth, apply best practice direct care worker supports and determine direct care worker core competencies across all elder service systems, and

• seventh, recognize and fund demonstration projects on how seniors can become more engaged in community life and utilized for their accumulated knowledge and experiences.

Having a reasonable, sustainable long term care system should be as important as funding pharmaceuticals, transportation and sports arenas.

In closing, I thank the delegation for holding today’s forum, and seeking varied opinions on this important issue. I welcome your comments and questions today or in the future.

FOOTNOTE: One of the most comprehensive, recent reports on issues in long term care is a Brown University report for the National Commission on Long Term Care. Entitled "Out of the Shadows: Envisioning a Brighter Future for Long Term Care in America", this report can be accessed by visiting http://www.chcr.brown.edu/PDFS/Brown_University_LTC_