As many as 400,000 Pennsylvanians suffer from Alzheimer’s or another type of dementia, and seven out of 10 of those are cared for at home by family, neighbors or friends. It is estimated that more than 1.3 million Pennsylvanians are informally caring for elderly parents or other family members or friends at home. Most are unpaid.
The economic value of the Pennsylvania’s caregivers has been estimated at more than $15 billion a year. These informal caregivers are the heart and soul of our long-term care delivery system. Often working under conditions of tremendous stress, they provide the majority of care and services received by our frail and elderly citizens. Without the support of these unpaid individuals many more care recipients would be forced into Medicaid funded nursing homes at an enormous added cost to taxpayers. There is little doubt that Pennsylvania’s caregivers are deserving of all the support the state can provide.
Pennsylvania has finally updated a long running program that provides some financial support, services and training for those who are giving care to another individual. Since 1990, the Pennsylvania’s Family Caregiver Support Program has worked to keep care recipients at home.
When it began in 1990, Pennsylvania’s program was a model for the rest of the nation. But limitations in the program constrained its usefulness and resulted in allocated funding going unspent. Support was available only to caregivers who were related to and living with the care recipient. And the initial financial reimbursement limits of $200 per month for out of pocket expenses (e.g. adult diapers) and $2,000 for one-time home modifications (e.g. ramps) were never increased during the over two decades of the program’s operation.
Act 112 of 2011 signed into law on December 22, 2011, expands Pennsylvania’s two decades old Family Caregiver Support Program. It amends the law that is codified at 62 P.S. Sections 3061-3068, with implementing regulations located in Title 6 of the Pennsylvania Code at Chapter 20. The new law will be effective date in 60 days. It will probably take a while for the regulations to be updated by the Department of Aging.
Here are some highlights of program changes specified by Act 112:
- The word “Family” is replaced with “Pennsylvania” in the name of the Act because individuals who are primary caregivers but who are not relatives of the care receiver will now be able to participate. The new name is the “Pennsylvania Caregiver Support Act.”
- Definitions are added for the terms “adult with chronic dementia” and “care receiver."
- Adult with chronic dementia" is defined as “A person 18 years of age or older residing within this Commonwealth who has an irreversible global loss of cognitive function causing evident intellectual impairment which always includes memory loss, without alteration of state of consciousness as diagnosed by a physician and is severe enough to interfere with work or social activities, or both, and to require continuous care or supervision.”
- "Care receiver" is defined as “A functionally dependent older adult or other adult with chronic dementia who is being cared for by a primary caregiver.”
- The term “primary caregiver” is redefined to delete the requirements that the caregiver be a relative of and reside in the same household as the care receiver. A primary caregiver is the “one identified adult family member or other individual who has assumed the primary responsibility for the provision of care needed to maintain the physical or mental health of a care receiver and who does not receive financial compensation for the care provided.”
- Section 4 of the Act describes the primary persons to be served as “unpaid, primary caregivers who provide continuous care to a care receiver.” The Department of Aging is directed to give priority in awarding assistance paid by Lottery funds to primary caregivers who are caring for an adult 60 years or older with chronic dementia, such as Alzheimer’s disease.
- Section 5 of Act makes only modest modifications to the level of reimbursement available to caregivers. Eligibility is only available if the care receiver’s household has limited income. Two levels of income eligibility are established: (1) 200% of poverty and (2) 380% of poverty.
- (1) In general, the maximum amount available to a qualified primary caregiver whose care receivers' household income is under 200% of the Federal Poverty Guideline (FPG) cannot exceed $200 per month for out-of-pocket expenses incurred for services including respite services and consumable supplies like incontinence pads. This is the same amount first established in 1990. However, Act 112 does provide for a limited exception: In individual cases of demonstrated need the maximum amount can be increased up to $500 per month. The need must be specifically documented in the care plan and reimbursement is limited to $200 if the Area Agency on Aging’s average monthly reimbursement exceeds $300 across its entire caregiver support program caseload. The maximum amount available for home modifications remains at the 1990 level of $2,000. (Note that 200% of the 2011-2012 FPG is $1,815 a month for a 1 person household and $2,452 a month for a 2 person household).
- (2) Where the care receivers household income is greater than 200% of the FPG but under 380% the primary caregiver must pay some portion of the out of pocket expenses covered by the act, based on a sliding scale established by the Department of Aging. If the care receiver’s household income is above 380% of the FPG no benefits can be paid under the act.
The Act’s removal of the caregiver support program’s familial and residency restrictions are important and legislators and advocates who have been working toward that goal for years are to be congratulated. However, the failure of the Legislature to approve additional increases in the 21 year old reimbursement levels is disappointing. An earlier version of the legislation that would have increased the reimbursement and home modification ceilings more substantially was unanimously approved by the House, but reduced in the Senate back to near the 1990 amounts.
For some caregivers a little more reimbursement could make the difference in avoiding institutional placement of the care receiver. Pennsylvania recently scored 46th in the nation in support of caregivers. The meager and constrained increases in Act 112 are unlikely to make for much of a change in that embarrassing ranking.