We have worked with hundreds of individuals facing the prospect of long term care.   We define “long term care” broadly to mean any physical condition where an individual requires the assistance of someone other than herself to conduct her daily activities.  Medicare defines this as medical and non-medical care to people who have a chronic illness or disability.   For most individuals in Pennsylvania this care takes place in their home and is known as “domiciliary care.” This care may be provided by family members or by home health aides or live-in aides.  

This need is great.  In Pennsylvania there are between 2 and 3 million people over age 60.  Almost 3 in 4 will require long term care before they die.   And nearly 80% of these patients will receive this care in their home.  Given the scope of this problem, it is surprising how little is known about this care and the available funding from state agencies.   The cost to the family without public funding is often prohibitive.  The costs may run from a few hundred dollars a month to thousands if live-in aides are required.  Caregivers who work for state licensed agencies are billed hourly at rate of about $10 to $25 for self-employed caregiver or caregivers hired directly by family.  For caregivers hired though an agency, rates are generally 40%-70% higher, since they are employees of the agency.  Live-in aides’ rates are $120–$200 per day for services.  The rates are 20-30% higher if there is a second care recipient. Live-in aides are available through agencies as well as direct hire.  Agencies' fees for non-medical home care are traditionally not reimbursed by State, Federal, or private health insurance. However, private long-term care insurance will often reimburse policyholders for part of the cost of non-medical home care, depending upon the terms of the policies. 

Sometimes a family requires a few different aides to perform the various duties required to keep a patient at home.   If the patient is rehabbing from a stay in a hospital, Medicare may be available to cover some of the medical costs.   This is often short-term and thereafter the costs remain with the patient.   In Pennsylvania, the Department of Public Welfare and Department of Aging has “Waiver” programs available to certain patient groups.  For our elderly clients who would otherwise require treatment in a nursing facility the Aging or 60+ Waiver provides attendant care, companion services, transportation, meals and other services to qualified individuals.  

The qualifications are that they are 60 or older, disabled (as per Area Agency on Aging functional review) and are nursing home eligible.  The patient must also have income less than $2,022 (300% of the federal benefit rate) and countable resources lower than $8,000.  “Countable” resources do not include the home where the patient resides.   Married couples have an income cap of $3,033 but have to qualify financially through the regulations pertaining to married individuals seeking medical assistance.   The major difference for eligibility between this program and medical assistance for nursing homes is that it is not an “entitlement” which means that you may not get this program even if you do qualify.   In most counties in Pennsylvania there are waiting lists for this program.   Since Pennsylvania ranks second in all states with the number of individuals over 65, there is a great demand for these programs sometimes overwhelming the Area Agencies.   The waiting lists for all waiver programs have been estimated to be in the tens of thousands.   The need is great but the funding limited.   The Pennsylvania Association of Area Agencies describes their funding as follows:

In 1965, the United States Congress enacted the Older Americans Act (OAA) establishing the Administration on Aging (AOA) and state units on aging in order to address the social service needs of older Americans. The OAA is the primary vehicle responsible to drive and thus promote the delivery of social services to the aging population; and its mission is purposefully broad: to help older people maintain maximum independence in their homes and communities and to promote a continuum of care for the vulnerable elderly.

With the passage of the OAA, as expected the original primary source of funding for Aging programs in the Commonwealth of Pennsylvania was the Older Americans Act with supplemental funding support from Title XX of the Social Security Act. In 1971, however, the General Assembly in Pennsylvania created the Lottery Fund, whose proceeds were purposefully targeted to provide property tax relief for the elderly in the Commonwealth. In the years that followed, the network of local Area Agencies on Aging (AAA) serving the Commonwealth’s 67 counties began to receive Lottery Funds in the form of an Aging Block Grant. The Aging Block Grant funds allowed the local AAAs to serve older adults in need of supportive services; and when Title XX funding disappeared, the General Assembly expanded the Lottery Fund to provide funding for rent rebates (administered by the Department of Revenue), free and reduced-fare transportation services for older Pennsylvanians and reduced vehicle registration fees (administered by the Department of Transportation). Lastly, the General Assembly again expanded the benefactors of the Lottery Fund to include the PACE (Pharmaceutical Assistance Contract for the Elderly) Program. While Lottery games grew in popularity and the Lottery Fund enjoyed significant growth, OAA funding stagnated and the very successful Pennsylvania Lottery has become the primary source of funding for services benefiting older Pennsylvanians. (Oct 2009 Policy Position)

For those individuals who are not able to obtain Waiver benefits, the “Options” and “Bridge” programs may be beneficial.  Additionally, there is progress being made in Pennsylvania on getting Medical Assistance for individuals in assisted living.  Talk to your elder law attorney to see if you qualify.