Comparative Legal News on the CARE Act: A Report from Pennsylvania’s AARP Family Caregiver Summit
Earlier this year, Kim Dayton reported in our Blog (here) about the new CARE Act, enacted in Oklahoma as a means to provide better transition from facility-based care to home care for individuals needing support. The CARE Act is a nation-wide project sponsored by AARP and thus I was excited to be invited to participate in an AARP Pennsylvania Family Caregiver Summit, as part of the discussion about introduction and passage of a CARE Act in my state.
The Summit was held yesterday with administrative agency heads, legislators and their staff invited to attend. The turnout was probably a bit affected by the weather reports for the day. (What happened to the predicted Nor’easter, anyway? Not that I’m complaining about winter weather that proves to be milder than predicted!) I found the event very interesting. As so often happens, I ended up being more of a student than a teacher, even while serving as a panelist.
It was quickly clear that virtually everyone in the room had experience with or personal awareness of the challenges of serving as a family caregiver under stress. The room was practically vibrating with stories about how tough it can be to know what to do when you confront the reality that a parent or other aging family member needs significant support. The keynote speaker, Cate Barron, a vice president of the PennLive and Patriot-News media group and by her own admission a take-charge kind of gal, spoke with great candor and humor about the process of realizing that a “diagnosis” of what is wrong did not necessarily provide answers to her mother’s need for assistance. We are so pre-programmed to believe that if we can find the right diagnosis of the problem, there must be a “solution” worth pursuing.
The opening presentation by Glenn Fewkes from the AARP National office provided the latest statistics and graphics about aging in the U.S. What I found especially interesting were his graphics about Long-Term Services and Supports (LTSS) for individuals with caregiving needs. It turns out Pennsylvania ranks near the bottom (42nd, according to the most recent statistics) on a national scorecard. evaluating LTSS for affordability and access. That means the state with the fourth “oldest” population has some real challenges ahead.
That is where AARP’s CARE Act project comes into play as a first step to improve supports for individuals needing care. As we reported earlier, CARE is an acronym for “Caregiver Advise, Record and Enable” and AARP’s model has straight-forward objectives. To me, a key goal in adopting the model CARE Act is to create smoother transitions. This can be facilitated by making sure that hospitals or rehab facilities have clear information about any designated “caregiver,” that they give notifice of discharge at least 4 hours in advance, and that they offer practical instruction on any medical tasks that will need to be performed in the home. For example, under the model CARE Act, the instruction shall include:
- a live demonstration of needed “after-care tasks”
- an opportunity for caregiver and patient to ask questions
- answers to the caregiver and patient questions “provided in a culturally competent manner and in accordance with the hospital’s requirements to provide language access services under state and federal law.”
My own research has shown that family members often cite “access to accurate information” as one of the most important first needs for families responding to caregiving crises. The CARE Act is clearly intended to respond to a critical first window of need — hospital discharge — by requiring facilities to give useful information and relevant instruction.
During the Family Caregiver Summit, there were a lot of good questions about the CARE Act, and it was great to have Pennsylvania State Representative Tim Hennessey on the panel. In his role as majority chair of the House Aging and Older Adult Services Committee, it is likely he will be able to provide early analysis and support for the CARE Act in Pennsylvania.
As part of my own preparation for the Summit, I took a closer look at Oklahoma’s result with the CARE Act. Title 63 Okla. St. Ann. Sections 3113- 3117 (the statutory provisions created by the April 2014 passage of Senate Bill 1536) became effective on November 1, 2014. The law requires that hospitals “provide each patient or patient’s legal guardian with an opportunity to designate one lay caregiver” following admission, and to record the designated caregiver and the caregiver’s contact information in the patient’s medical record. Such a choice then triggers the hospital to “request the written consent” of the patient or guardian to release medical information to the patient.” Only if the patient both designates a lay caregiver AND gives “written” consent is the hospital then obligated to do anything further with respect to discharge planning with the caregiver.
But what happens in Oklahoma when the written consent to share information with the designated caregiver is given?
If the designation and release provisions for the lay caregiver have been satisfied, then Section 3114 of the Oklahoma law provides that the hospital is to give the caregiver notice of the planned discharge “as soon as is practicable.” Hmmm. No mandatory minimum advance notice — not even the minimal 4 hour requirement. Further, there is no provision for live demonstrations — or, for that matter, any demonstration — of after-care tasks. Section 3115 merely provides that “as soon as practicable, the hospital shall attempt to consult with the designated lay caregiver to prepare him or her for aftercare and to issue a discharge plan describing a patient’s aftercare needs.”
Looks to me like the hospital lobby is alive and active in Oklahoma.
The good news is that New Jersey has also tackled the CARE Act concerns, and the result seems to come much closer to meeting the real needs of individuals and families. New Jersey Assembly Bill 2955 was approved on November 13, 2014, as Public Law 2014, Chapter 68. Although early versions of the bill included a requirement that designated caregivers be given at least 24 hours advance notice of discharge, the final version provides merely for notice “as soon as possible, and in any event upon issuance of a discharge order by the patient’s attending physician.” New Jersey was more successful on the critical instruction plan proposed by AARP, with the law now requiring that the “hospital shall consult with the designated caregiver” and issue a “discharge plan.”
Further, in New Jersey, the consultation and issuance of a discharge plan shall “occur on a schedule that takes into consideration the severity of the patient’s condition, the setting in which care is to be delivered, and the urgency of need for caregiver services.” The discharge plan must include “instructions on all after-care assistance tasks” and such “training and instructions may be conducted in person or through video technology, at the discretion of the caregiver.” As with the model CARE Act, New Jersey’s law mandates that the “caregiver be provided opportunities to ask questions” and get answers.
For more on the CARE Act, including AARP’s presentation, and the response by panelists, including Pennsylvania State Representative Tim Hennessey; Vicki Hoak, CEO of the Pennsylvania Homecare Association; John Denny of Denny Civic Solutions and the Campaign for What Works; and me, see the schedule for rebroadcasts of the program on Family Caregiving in PA on PCN-TV , including planned airings on December 11 and 17.
And let us know when the CARE Act reaches your state.