Concerns Raised about Aging Department Consolidation

Pennsylvania legislators are currently considering Governor Wolf’s proposal to merge four Pennsylvania human service agencies. The Governor would like to consolidate the current Departments of Aging (PDA), Drug and Alcohol Programs (DDAP), Health (DOH), and Human Services (DHS) into a unified Department of Health and Human Services (DHHS).  

In recent weeks legislators have heard testimony from Wolf Administration officials offering support for consolidation, and from groups and individuals who expressed various degrees of opposition. Many of the concerns relate to the impact of the merger on the Department of Aging.

The Pennsylvania Department of Aging (PDA) has a 40 year history in Pennsylvania. In 1973 an amendment to the federal Older American’s Act required states to establish Area Agencies on Aging (AAAs) to provide programs and services for older adults. In response Pennsylvania established a network of county or non-profit based local agencies. In 1978 the Legislature established the PDA as a cabinet level position.

The PDA currently has 117 employees. The agency coordinates and funds a broad range of programs and services that benefit older (age 60 and over) Pennsylvanians and their families and caregivers. Most of these services are made available through the 52 local AAAs. About 2/3rds of the PDA funding to local AAAs comes from the Pennsylvania lottery.  

The Wolf Administration states that consolidation of PDA with other human services agencies makes sense “in order to promote more effective collaboration and service delivery, enhance program effectiveness, and eliminate duplicative processes.” Seniors could benefit from having a single agency as their point of contact for state provided health and human services. The hope is that consolidation will reduce complexity and confusion for seniors and individuals with disabilities by providing one door to needed services instead of several. Consolidation has the potential to reduce red tape for providers. And it should result in modest, but ongoing cost savings. For more on the Administration’s rationales, see the Governor’s press release here. And the Administration has posted updated information on its "unification" proposal here.

Many organizations across the state have expressed reservations about the merger of the PDA into the new DHHS super-agency. Organizations testifying about concerns with this aspect of the proposal have included the PA Association of Area Agencies on Aging (P4A), the Center for the Advocacy for the Rights and Interests of the Elderly (CARIE), the Southwestern Pennsylvania Partnership for Aging (SWPPA). The Pennsylvania Association of Elder Law Attorneys, of which I am a past President, has come out against including the PDA in the consolidation. A number of legislators have also expressed reservations.

Here are some of the concerns being raised:

Loss of a cabinet level voice advocating for seniors. Since 1978 Pennsylvania seniors have had cabinet level representation. As expressed by House Aging and Older Adult Services Chairman Tim Hennessey at a House Appropriations Committee meeting: “What position do you think would be the most effective advocate for the elderly: a cabinet secretary sitting beside other cabinet secretaries with the governor; or a deputy secretary three levels down from the governor, as the consolidation plan proposes?”

Buried in Bureaucracy. Aging may get lost in the large DHS dominated super-agency bureaucracy. It could get “buried in bureaucracy” according to Representative Gene DiGirolamo, chair of the Human Services Committee. Aging has only 117 employees compared with the 17,000 total projected employees of DHHS.  

Potential reduction in lottery funding. As we often see noted in its advertising, proceeds from the Pennsylvania lottery go to support programs benefiting older residents. The PDA and AAAs use lottery funds for senior centers and meals, low cost prescription assistance (PACE and PACEnet), transportation, property tax and rent rebates, home and community based services and other care related services. They fund education and outreach activities, ombudsman services, protective services, family caregiver supports, the nursing home transition program and the OPTIONS program.

Approximately 78 percent of PDA funding comes from the Pennsylvania Lottery with the other 22 percent being derived from federal funds. The lottery funds are used by the PDA and AAAs to benefit older adults who are not on Medicaid. As described by Rebecca May-Cole, Executive Director of P4A, “the typical senior receiving services through an AAA is a 79-year-old widowed female living just above the poverty level; she is not eligible for Medicaid, but also has a very limited income.”

But lottery funds can also be distributed to the Department of Human Services and used to fund the state’s share of the cost of Medicaid long term care services. In other words, the lottery funds can be used to replace General Funds. The fear is that after consolidation lottery funding will be diverted from the PDA and AAAs to DHS and used reduce state General Fund outlays for Medicaid.

“If it ain’t broke, don’t fix it.” As noted by Chairman Hennessey there is no need to include the PDA in the DHHS merger because PDA already functions smoothly. DHS, on the other hand, has a recent record of failure with its assumption of handling enrollment in the Aging Waiver program. In 2016 the enrollment functions of the PDA Waiver program were removed from AAAs and outsourced by DHS to a private company. The transition was poorly implement and the failure has delayed critically needed services for untold numbers of seniors. This recent misadventure casts doubt on the ability of a DHS controlled super-agency to oversee PDA functions.  

Conflicts of Interest: There are potential conflicts of interest in having one super-agency (DHHS) handling federally funded programs which require separation of function. For example, is it appropriate to have the Long-Term Care Ombudsman Program (currently a PDA function) housed with the same agency charged with nursing home licensing and enforcement? Would this violate the federally mandated independence of the Ombudsman?  

Lack of Stakeholder Input: The consolidation proposal was developed without meaningful external stakeholder input.

Lack of adequate study: There has been no study to determine if the consolidation makes sense. More study should be required before moving forward with its implementation.

For all of these reasons legislative approval of the proposed consolidation seems to be in doubt. We may learn its fate in the next few months. If you want to provide your legislators with your opinion on the merger you can find their names and contact information here.  

A video of the April 17, 2017 Joint House Aging and Older Adult Services, Health, and Human Services Committees hearing on the consolidation is available here.

What is the difference between a health-care power of attorney and a living will?

There is a lot of misunderstanding about living wills and health care powers of attorney. Even health care professionals can be confused. Here is my explanation of the major differences between these two forms of health care directive. 

If you are medically competent you get to make health decisions for yourself. But a problem arises if you are not competent to make your own decisions. In that case, who decides, and what can you do to make sure the decisions will be consistent with your intentions?That is where advance health care directives come in.

Two notable advance health care directives are the health care power of attorney and the living will. You can use these documents to help ensure that you always get the kind of health care treatment you want even if you are unable to speak up for yourself.

What are the differences between these two documents? Do you need to have both?

What is a health care power of attorney?

A health-care power of attorney authorizes another person to make health-care decisions for you when you cannot make them yourself. The person you choose is called your health care agent.

The document must be signed by you while you are competent. In it you can describe the types of treatment that you would and would not want to receive at the end of your life. But you do not have to do so. The document can give your agent the authority to make any and all health-care decisions you could make, if you were competent. It is important to note that the health care power of authority is only stand-by authority. You will continue to make decisions for yourself as long as you can do so.

What is a living will?

A living will is a written declaration that instructs your doctor regarding the use, withholding or withdrawal of life-sustaining treatment if you are terminally ill and lack the capacity to make decisions. A living will directs your doctor’s actions when the use of life-sustaining treatment would serve only to postpone the moment of death or maintain you in a permanent unconscious state, but would not provide a cure for the condition.

A living will applies only in the limited situation where you have an end-stage medical condition or are permanently unconscious. It is not relevant to other circumstances.   

Under Pennsylvania’s living will statute you may appoint someone to make decisions regarding life sustaining treatment for you if you are ever both incompetent and either terminally ill or permanently unconscious. This person is called a surrogate.

What is the difference between a health-care power of attorney and a living will?

One significant difference is that the health-care power of attorney is much more broadly applicable. A living will comes into effect only when the issue is whether to use a life-sustaining treatment to postpone the moment of death or maintain you in a permanent unconscious state. In that limited circumstance, a living will gives instructions regarding life-sustaining treatments. 

A health care power of attorney is not limited to terminal illness situations but can be used to address the broad range of health-care decisions that may arise whether you are terminally ill or not. 

Both documents allow you to select someone else to make decisions for you when you are unable to do so, but with a living will that person can only act if you are terminally ill. 

A living will forces you to anticipate the circumstances that will arise in the future and give your instructions before you have knowledge of your specific medical situation. A health care power of attorney can provide for better informed decisions because it allows your agent to evaluate the specific situation that has arisen and make a decision based on the actual circumstances.

Should I have both documents?

Ideally your advance directive will include guidance as to the medical treatments you would want to refuse in specific situations, and will name a person to make decisions for you in other situations or if your intentions are not clear. You can set forth your desires on these related but separate issues in separate documents if you wish, but it is also possible for you to combine your living will instructions and health care power of attorney appointment in one document.

It makes sense to use only one document so that health care professionals can find all of the relevant information in one place, and your health care agent will be fully aware of your specific instructions. I suggest that the best document for most people is a health care power of attorney that also provides some instructions regarding the use of life sustaining treatment in the event of your terminal illness.

I personally have just one document – a health care power of attorney. It gives my agent wide discretion in making decisions for me, including treatment at the end of my life. And I have talked to my agent and other family members about my philosophy towards end of life care. That communication is a key element in helping ensure that the appropriate decisions will be made for me. 

Going Home - How to Prepare for your Hospital Discharge - Part 2

This is part 2 of my series on how to prepare to go home after a hospital discharge. Click here for Part 1.

Being in the hospital is tough on the patient. If you are in the hospital for a few days, you should expect that your functional abilities will decline. When you return home there is a good chance you will need assistance and supportive care for a while. But, you will no longer have the professional care support that was available to you when you were in the hospital. You may qualify for some limited licensed home health services. But most or all of your care needs will have to be met by your non-professional family caregivers. Hopefully, your family will be prepared. 

Recently I wrote about the importance of advance preparation by caregivers when a loved one is being discharged from a hospital. See Preparing for your Hospital Discharge. As I noted, one way your family can prepare is by taking full advantage of the support that should be available from the hospital in conformity with the new Pennsylvania CARE Act.

This article provides some additional information on what you can do to prepare for a hospital discharge. Better preparation can improve the post-hospital quality of care, reduce the likelihood of re-admission, and limit the physical and emotional stress on caregivers.

Medicare Discharge Requirements

Medicare regulations require hospitals to follow rules to help you with your discharge and make your transition home safe. These discharge planning rules only apply if you are considered a hospital inpatient. (They do not apply if you are an outpatient or on observation status). 

The hospital must provide a discharge planning evaluation to all patients who are likely to suffer adverse health consequences upon discharge if there is no adequate discharge planning, and to other patients upon the patient's request, the request of a person acting on the patient's behalf, or the request of the physician. A nurse, social worker, or other appropriately qualified personnel normally will develop the evaluation.  A discharge plan must be developed if the evaluation indicates it is needed or if the patient’s physician requests it. (42 CFR 482.43(c)).

CARE Act Requirements

In addition to the Medicare rules, the Pennsylvania CARE Act requires hospitals to provide discharge planning assistance when a hospital inpatient is being discharged to home. When an inpatient is to be returning to their residence, the CARE Act requires the hospital to consult with the patient’s designated lay caregiver and issue a discharge plan that describes the patient's after-care assistance needs at the residence.

The CARE Act discharge plan also must include contact information for any health care, community resources, long-term care services and support services necessary to successfully carry out the patient’s discharge plan and contact information for a hospital employee who can respond to questions about the discharge plan. Hospitals are also to provide lay caregivers with instructions in all after-care tasks described in the discharge plan.

Questions to Ask

When you learn that a discharge is planned, find out who the hospital has assigned as your “discharge planner.” Recognize that the patient and family home caregiver are critically important members of the discharge planning team. This should be an interactive process. Be prepared to ask lots of questions to get the guidance and assistance you need. Express your concerns. Take notes. Try to have another person (e.g. another family member or friend) involved in discharge planning discussions. They can help ask questions and listen to directions.   

Here are some questions to consider asking prior to the discharge: 

• Who on the hospital staff will assist with the discharge planning?
• When will the discharge take place?
• How will the patient get home safely?
• What equipment and supplies will be needed? How can they best be obtained?
• What patient care procedures will the home caregivers need to perform?  Do the caregivers have the physical ability and knowledge needed to perform them?
• How can the home caregivers get the training, practice and support they need to be able to perform required tasks and procedures?
• What special foods and diet will the patient require?
• What medications will be required? Will the caregiver require training in administering medications?
• What changes in condition or other problems might occur at home? How should the patient and caregivers respond if problems arise?
• What resources will be available to provide respite time for the home caregivers?
• What follow up care will be needed? When is the first follow-up appointment?
• Who can the patient and/or caregivers call with questions and concerns?
• Will professional in-home assistance (such as physical therapy or occupational therapy) be needed? Who will arrange for those services?
• What costs will be encountered and how will they be paid (e.g. Medicare, Medicaid. VA benefits, out of pocket)?   

Additional tips on preparing for a hospital discharge to home are available online. The Medicare website includes a planning checklist: Your Discharge Planning Checklist [opens as a .pdf file]. I suggest that the patient and/or primary caregiver print out this Medicare booklet and take it with you to the hospital.

Another helpful checklist is Going Home: What you need to know

The Next Step in Care website has wonderful resources for patients, caregivers and providers.Visit www.medicare.gov/HHCompare/Home.asp to learn about home health services.