Monday, May 28, 2012

National Plan to Address Alzheimer's Disease Released

As many as 5.1 million Americans have Alzheimer's disease and that number is likely to double in the coming years. On January 4, 2011, President Obama signed the National Alzheimer’s Project Act (NAPA) which required the Secretary of the U.S. Department of Health and Human Services (HHS) to establish a National Alzheimer’s Project to:
·       Create and maintain an integrated national plan to overcome Alzheimer’s disease.
·       Coordinate Alzheimer’s disease research and services across all federal agencies.
·       Accelerate the development of treatments that would prevent, halt, or reverse the course of Alzheimer’s disease.
·       Improve early diagnosis and coordination of care and treatment of Alzheimer’s disease.
·       Improve outcomes for ethnic and racial minority populations that are at higher risk for Alzheimer’s disease.
·       Coordinate with international bodies to fight Alzheimer’s globally.
The law also established the Advisory Council on Alzheimer’s Research, Care, and Services and required the Secretary of HHS, in collaboration with the Advisory Council, to create and maintain a national plan to overcome Alzheimer’s disease (AD).
After releasing a preliminary plan and reviewing comments, the Council released the full plan details on May 15th.  The national plan to fight Alzheimer’s is aimed at finding ways to prevent and effectively treat the disease by 2025. It outlines a series of initiatives to reach that goal, including increased research funding, more resources for caregivers and greater public awareness about the neurologic disorder.
For physicians and other health professionals, the Dept. of Health and Human Services (HHS) wants to bolster education efforts on identifying and caring for Alzheimer’s patients, increase support for geriatric training programs and broadly disseminate guidelines on caring for dementia patients. HHS has also launched a website to serve as a one-stop shop for caregivers and others seeking information about Alzheimer’s.
The initiatives announced on May 15th include:

1.     Research -- The funding of new research projects by the National Institutes of Health (NIH) will focus on key areas in which emerging technologies and new approaches in clinical testing now allow for a more comprehensive assessment of the disease. This research holds considerable promise for developing new and targeted approaches to prevention and treatment. Specifically, two major clinical trials are being funded. One is a $7.9 million effort to test an insulin nasal spray for treating Alzheimer's disease. A second study, toward which NIH is contributing $16 million, is the first prevention trial in people at the highest risk for the disease.

2.     Tools for Clinicians -- The Health Resources and Services Administration has awarded $2 million in funding through its geriatric education centers to provide high-quality training for doctors, nurses, and other health care providers on recognizing the signs and symptoms of Alzheimer's disease and how to manage the disease.

3.     Easier access to information to support caregivers -- HHS' new website,, offers resources and support to those facing Alzheimer's disease and their friends and family. The site is a gateway to reliable, comprehensive information from federal, state, and private organizations on a range of topics. Visitors to the site will find plain language information and tools to identify local resources that can help with the challenges of daily living, emotional needs, and financial issues related to dementia. Video interviews with real family caregivers explain why information is key to successful caregiving, in their own words.

4.     Awareness campaign -- The first new television advertisement encouraging caregivers to seek information at the new website has been debuted. This media campaign will be launched in earnest this summer, with the hope of reaching family members and patients in need of information on Alzheimer's disease.

Although these steps are encouraging,the funding seems miniscule to this writer in comparison with the costs of the disease and inadequate to reach the goal of preventing and effectively treating Alzheimer’s by 2025. I also worry about what will happen to even this limited funding as Congress eventually is forced to deal with constrained government resources and the “fiscal cliff” that is looming at the end of this year. Hopefully the above initiatives will at least raise public awareness and the willingness to talk about this devastating disease.  
Here are some links of note:
National Plan to Address Alzheimer's Disease
Full PDF Version (69 PDF pages)

PRESS RELEASE: Obama Administration Presents National Plan to Fight Alzheimer’s Disease
Full PDF Version (2 PDF pages)

New Alzheimer's Website

Wednesday, May 23, 2012

Study documents Cost of Long Term Care in Pennsylvania

For the past 9 years Genworth, a leading provider of long term care insurance, has conducted an extensive survey of costs charged by long-term care service providers across the United States. 

Research shows that about 70 percent of people age 65 or older will need long term care services at some point in their lifetime. Long term care is the type of care you may need if you have a prolonged physical illness, disability or severe cognitive impairment (such as Alzheimer’s disease) that keeps you from living independently. These limitations may prevent you from carrying out basic self-care tasks, such as bathing, dressing or eating, called Activities of Daily Living (ADLs). 

Unfortunately, the cost long term care services is generally not covered by health insurance and can easily destroy a family's financial security.  The Genworth survey of nearly 15,300 providers presents valuable cost of care information that can help individuals in their planning to avoid a financial catastrophe. 

The Genworth 2012 survey has now been published. It finds that overall the cost of care among facility-based providers has been steadily increasing. For example, in 2007 the median annual rate for a private nursing home room in the US was $65,700, compared with the 2012 median annual rate of $81,030. This means that Americans can expect to pay approximately $15,330 more per year today for a nursing home than they had to pay in 2007. This increase represents a 4.28 percent compound annual growth rate over that period.

On the other hand rates charged by home care providers for “non-skilled” services have remained relatively flat over the past five years. For example, whereas the national hourly private pay median rate charged by a licensed home health agency for a home health aide was $18 in 2007, the 2012 hourly rate has only slowly crept up to $19. The historical compound annual growth rate for this type of care service has been only 1.09 percent over a five-year period. Genworth states that home care rates have remained flat in part because of increased competition among agencies and the availability of unskilled labor, and because the companies that provide these types of services do not incur the costs associated with maintaining stand-alone health care facilities.

The study provides a list of rates being charged in individual localities throughout the nation including Williamsport and Scranton/Wilkes-Barre in Pennsylvania.   

The median rates for various services in Williamsport and Scranton/Wilkes-Barre are:
Homemaker Services Hourly Rates
$19 Williamsport
$17 Scranton-Wilkes-Barre
Home Health Aide Services Hourly Rates
$21 Williamsport
$20 Scranton-Wilkes-Barre
Adult Day Health Care Daily Rates
- (Data Not Available for Williamsport)
$60 Scranton-Wilkes-Barre
Assisted Living Facility Monthly Rates
$3,130 Williamsport
$2,500 Scranton-Wilkes-Barre
Nursing Home Daily Rates (semi-private room)
$251 Williamsport
$248 Scranton-Wilkes-Barre
Nursing Home Daily Rates (private room)
$282 Williamsport
$253 Scranton-Wilkes-Barre

Here is a link to the Pennsylvania State-Specific Data from the Genworth 2012 Survey:

Monday, May 21, 2012

The Continued Drugging Of Demented Elders

[The following post was written by Cindy Keith of M.I.N.D. in Memory Care, State College, Pennsylvania. Ms. Keith was one of the presenters at Marshall, Parker and Associates recent Professional Updates. The views and opinions expressed in the article are those of its author and do not necessarily represent those of Marshall, Parker and Associates.]

          I recently read an article posted by Dementia & Alzheimer’s Weekly ( which included a video with the article.  The article was entitled “Depakote Fined $1.6 Billion for Sedating Dementia Patients.”  Depakote is manufactured and marketed by Abbott Labs and is primarily prescribed (and approved by the FDA) by physicians as an antiepileptic medication to control seizures.  (Permission to quote this article obtained)

          The article talks about a plea agreement in a U. S. District Court (Western District of Virginia) case for “alleged use of illicit incentive payments by Abbott to physicians to encourage prescription writing of Depakote, as well as misrepresentations of the drug’s safety and efficacy, and off-label marketing.”  

          Physicians will quite often prescribe drugs “off-label” meaning the drug has never been tested and approved by the FDA for that purpose.  Every, single drug being given to an elder with dementia to help control negative behaviors is being given off-label, and these psychotropic drugs all have black box warnings which means they have serious side effects and can hasten death.  Common prescriptions written for psychotropic drugs for behavior control include Seroquel, Risperdal, Zyprexa, Haldol, and others.  Anti-anxiety meds such as Valium, Ativan, Xanax, and Klonopin are also frequently used in this manner but always increase the risk of dizziness, falls and visits to the emergency room.  

          The reason these drugs are being prescribed is because there are no drugs approved by the FDA for behavior control in elders with dementia.  What too many facilities have done for years, is use these drugs to medically restrain an elder with dementia who is acting out or causing staff extra time and attention.   Thankfully, the tide is turning with regulatory agencies checking medication records for extended use of these medications and penalizing those facilities who automatically use drugs to control behaviors. These regulatory agencies are now aware that when facilities provide specific, on-going dementia training for the staff, the need for these medications drops dramatically.  

          The fine imposed on Abbott Labs is the second largest in history, with the largest fine being leveled against Eli Lilly & Company in 2008 for promoting the use of Zyprexa in dementia patients, as well as elders in general to “treat anxiety, irritability, depression, nausea, Alzheimer’s and other mood disorders.”

          I believe there are times when the off-label use of these drugs in elders with dementia is appropriate to protect that elder from self-harm, or to protect families and staff.  However, it has been proven time and again that when people know how to correctly re-direct an elder with dementia, or de-escalate their agitation, those meds are not necessary.  So if the staff and the physician feel that elder truly needs that psychotropic medication, then they must extensively document reasons why, and every time it is given in an “as needed” (PRN) basis, they must document what other interventions were tried first and failed.  An example would be if Bill, who has dementia is noted to be increasingly agitated this morning and has an order for a PRN Risperdal for agitation.  After attempts at redirection, staff may document:

          “Bill noted to be pacing and seemed agitated after breakfast; unable to verbalize what is upsetting him; denies need to use restroom or presence of pain; attempted to engage him in bowling activity and he refused; attempt to interest him in listening to his favorite music refused; walking with Bill for 15 minutes and conversing unsuccessful in decreasing his agitation; PRN Risperdal given resulting in decrease in agitation.  Bill is currently engaged in group activity and appears calm.” 

          We must all continue to monitor the medications our loved ones with dementia are being given, whether they are at home or in a facility.  We have an obligation to learn what we can about the dementia, as well as learn ways to control behavior that do not automatically require the use of a medication.  It’s nice to see that two of these huge pharmaceutical companies have been made to pay for preying on frail elders. 

Cindy Keith, RN, BS, CDP
M.I.N.D. in Memory Care

Wednesday, May 16, 2012

Federal Court Invalidates Pennsylvania Funeral Regulations

A Federal District Court has invalidated many of Pennsylvania's existing funeral regulations including one that bans food during services. 

Pennsylvania's Funeral Director Law (the “FDL”) was enacted in 1952 with a stated purpose of providing "for the better protection of life and health of the citizens of this Commonwealth by requiring and regulating the examination, licensure and registration of persons and registration of corporations engaging in the care, preparation and disposition of the bodies of deceased persons . . . .” 63 PA. STAT. ANN. § 479.1 (1952).

The Pennsylvania State Board of Funeral Directors (the “Board”) issues regulations to implement the FDL. In accordance with the FDL the Board is composed of nine members, five of whom are licensed funeral directors. 63 PA. STAT. ANN. § 479.16(a). 

A lawsuit (Heffner v. Murphy) was brought in federal court by a number of licensed funeral directors who claimed that the FDL and its regulations have not undergone significant change since their initial implementation even though the funeral directing industry has experienced massive changes since that time, a result of which has been increased competition in the industry. They asserted that the rise in competition has not been warmly received by established funeral directors such as those serving on the Board. 

Thus, the Plaintiffs contended that the Board’s current interpretation of the FDL and regulations, which in some instances completely contradicts its past interpretations, is driven by an anti-competitive attitude that is aimed towards appropriating an even larger market share, if not an absolute monopoly. The Plaintiffs asserted that many of the Board's interpretations violate both the federal and state constitutions in various ways.

In a massive 159 page opinion, Federal District Court Judge John E. Jones III invalidated a number of the regulations. The Judge stated that "the statutory scheme of the FDL and the Board’s interpretation of this clearly outdated law, evince the urgent need for the Board to finally clarify and modernize the FDL, a request Plaintiffs, funeral directors, and cremation service providers have been requesting for some time." 

While finding that many of the regulations fail to pass constitutional muster the Court noted that they may lend themselves to being redrawn in a way that does. Thus, the Court stayed its mandate for 90 days to provide the Funeral Board with an appropriate period of time to consider and possibly rectify the issues identified in the Court's opinion. The Court set up a conference call to be held on August 8, 2012 to determine whether additional action by the court will be required.

Further Information:

Heffner v. Murphy (USDC Middle District of PA, May 8, 2012)

Ruling Throws out decades-old funeral regulations

Saturday, May 12, 2012

Pennsylvania May Limit Punitive Damages against Long-Term Care Facilities

Legislation that limits the amount of punitive damages that may be awarded in civil liability cases against long-term care facilities was approved in January by the Pennsylvania House of Representatives by a vote of 103 to 89. House Bill 1907 is now under consideration in the state Senate. Although controversial, the bill could become law this summer.
If enacted in its present form, House Bill 1907 would limit the size of a punitive damage award to no more than 200 percent of the compensatory damages awarded in cases involving personal care homes, assisted living communities and long-term care nursing facilities. In addition to nursing homes, the cap would apply to health care professionals working in personal care homes, assisted living facilities, long-term care centers, hospices and other health care agencies.
The cap would not apply to cases in which intentional misconduct is alleged.
Punitive damages are intended to punish and deter the defendant and others from engaging in conduct which is found to be particularly outrageous. Punitive damages may only be awarded under limited conditions for conduct that is “outrageous because of the defendant’s evil motives or his reckless indifference to the rights of others.” Arbor Associates, Inc. v. Aetna U.S.
Healthcare, 2003 WL 1847497 *2 (Pa. Com. Pl. 2003)(quoting Restatement (Second) Torts section 908 (2)). A court may award punitive damages only if the described conduct was “malicious, wanton, reckless, willful, or oppressive.” Id.

Currently, Pennsylvania’s Medical Care Availability and Reduction of Error (MCare) Act contains a provision that limits the amount of punitive damages against physicians to 200 percent of the compensatory damages. House Bill 1907 would extend that similar protection to long-term care facilities.
“By extending the MCare limits on punitive damages to these additional health care providers, we can take another step in controlling health care costs for consumers and providers in Pennsylvania,” said the legislation’s prime sponsor Representative Glen Grell. “The operators of these facilities need some predictability and certainty when they become involved in a civil case. This legislation provides them with some protection from a distorted punitive award while preserving full recovery of actual damages and helps to rebalance the legal system.”
The bill is strongly supported by a coalition led by the Pennsylvania Health Care Association, which represents long-term care providers, including nursing homes, personal care homes and assisted living residences. The coalition argues that “[e]xcessive litigation and damage awards result in higher consumer prices and decreased availability of services. The high legal costs paid by Pennsylvania health care providers, employers, and governments inhibit job growth, increase health care costs, and limit access to medical care.”
Opponents of the bill argue that the ability for the elderly to recover economic and compensatory damages is already very limited and that the law would prevent the legal system from effectively punishing abusive nursing homes and deterring outrageous conduct. In addition, opponents question whether this legislative limit on jury decisions and awards is permitted under the Pennsylvania Constitution.   
In my mind HB 1907 is yet another iteration of our increasing abandonment of our nursing home residents. Currently we are in the process of reducing the financial support we provide nursing homes through the Medicare and Medicaid programs. It is logical to expect that that lower reimbursements will lead to reduced staffing levels and quality of care. Now the legislature may limit our nursing homes potential liability for engaging in malicious, wanton, reckless, willful, or oppressive conduct toward their residents.
The future is looking bleaker and bleaker for our state’s thousands of nursing home residents.     
Further Information
PA Health Care Association Coalition Letter of April 27, 2012

Pennsylvania Alliance for Retired Person’s Press Release on HB 1907

Are we Abandoning our Nursing Home Residents?

Friday, May 11, 2012

New Informal Dispute Resolution Process for PA Long Term Care Nursing Facilities

The Department of Health (DOH) is Pennsylvania's State Licensing Agency for nursing homes. Its Division of Nursing Home Facilities carries out the functions of the State Survey Agency for the federal Center for Medicare and Medicaid Services (CMS). As such, the DOH conducts surveys and makes recommendations to CMS for certification of nursing homes.

Pursuant to federal regulations the DOH has established a process for the informal review of nursing facility deficiencies (the items of non-compliance discovered during the surveys). This review process, referred to as informal dispute resolution (IDR) offers nursing homes an opportunity to request information on recently issued deficiencies and provide documentation to demonstrate that the deficiency should not have been cited.

If an IDR review results in the removal or revision of any deficiencies, DOH issues a revised statement of deficiencies and any penalties that were imposed on the nursing home are amended or withdrawn. From the period January 2010 to September 2011 DOH received requests from nursing homes to review 199 deficiencies. Of these 19 (about 10%) were removed and another 19 revised or reworded based on the information submitted by the nursing home.

Under Act 128 of 2011 nursing homes will now have the option to utilize an alternative form of deficiency review, called an Independent Informal Dispute Resolution review (IIDR). The IIDR reviews will be conducted by an independent entity, Quality Insights, which is the federally designated Quality Improvement Organization (QIO) for Pennsylvania.  A nursing home now has the option to request that the deficiency in question be reviewed by the QIO agent. While the state pays for the IDRs conducted by the DOH, nursing homes will pay for IIDR reviews conducted by QIOs.

The IIDR does not replace the IDR process which remains available – it provides another optional path of review that the nursing facility can utilize. The nursing home decides whether to proceed by IDR or IDRR. After it completes its review the QIO provides its written decision to the facility and to the DOH. The DOH reviews the results of the IIDR, decides whether it agrees or disagrees, and makes the final decision. If the IIDR agent sustains the deficiencies, its decision must include the rationale and provide recommended action that facility can implement to achieve compliance.  If the IIDR agent disagrees with DOH citation, DOH is required to provide a written explanation for its decision to nullify the IIDR report.

The hope is that independent reviews conducted by the QIO will improve the timeliness and efficiency of the review process and that Quality Insights expertise will improve the ultimate decisions made. Use of IIDR will also help reduce the burden on the DOH and ease provider frustration with perceived subjectivity by DOH surveyors by giving nursing homes an option for an independent review.  Nursing homes (and possibly residents) may also benefit to the extent that the QIO can provide ongoing guidance to help nursing homes limit deficiencies and improve quality.  

Act 128 became effective in April 2012.

Tuesday, May 8, 2012

PA Ruling: Son must pay mother’s nursing home bill

John Pittas mother was injured in an auto accident and spent 6 months in Liberty Nursing Home, a subsidiary of Health Care & Retirement Corporation of America (HCRA). In March 2008 she left the nursing home and departed for Greece without paying the bill.

HCRA sued John for his mother’s debt to the nursing home. Children can be responsible for the unpaid cost of their parent’s care and maintenance under Pennsylvania’s Indigent  Support law (23 Pa.C.S.A §4603). The law, sometimes called a "filial support" law, specifies that certain relatives (including a child) "have the responsibility to care for and maintain or financially assist an indigent person." Courts in Pennsylvania have been allowing nursing homes and other providers of care to use this statute to sue children for the unpaid costs of the services they provided to the child's parent.

The trial court found John liable in the amount of $92,943.41.  On May 7th a Pennsylvania Appeals court upheld the judgment. It said that John was liable because the evidence showed that his mother could not pay her nursing home bill meaning she was “indigent” under the law, and John had sufficient ability to support her. HCRA v.Pittas (Pennsylvania Superior Court, May 7, 2012).

The nursing home had applied for Medicaid benefits for the mother under the Pennsylvania Medical Assistance program. There was a problem with the Medicaid application and it was on appeal. But according to the Court, HCRA could sue John even before his the mother’s appeal for Medical Assistance payment was decided, and it was not required to sue Mrs. Pittas’ husband or other children or consider their ability to contribute to the cost of her care. HCRA could choose which family members to go after, and it could legally decide to go after John alone.

The Appeals Court noted that to qualify as "indigent" Mrs. Pittas didn’t need to be completely destitute and helpless. She was "indigent” for purposes of the Indigent Support law if she did not have sufficient means to pay for her care and maintenance. If she didn’t have the resources to pay for her own care, and John had the ability to provide support, he was liable.

Children are often surprised to learn that they can be held responsible for their parent’s unpaid medical and care related expenses. It just doesn’t seem fair. But, whether fair or not, the Pittas case shows that the child’s support obligation to the parent is the law in Pennsylvania.   

Children: be warned. If your parent needs long term care and may someday be unable to pay for it, you should find out about your potential financial liability and what to do about it. If you live in Pennsylvania, you can consult with one of the certified elder law attorneys at Marshall, Parker and Associates. The first consultation is free of charge.  

For More Information

HCRA v. Pittas (2012 Pa. Super 96, May 7, 2012).

Saturday, May 5, 2012

Pennsylvania Poised to Adopt Uniform Guardianship Jurisdiction Legislation

Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act

In the United States each state has developed its own distinct system of protecting adults who need the assistance of a guardian. The multiplicity of potential state jurisdictions means that confusing issues and conflicts frequently arise when an incapacitated person has some presence in more than one state. 

Consider the problems that can arise in the following "snowbird" situation. (This scenario is based on a number of problem situations described in a letter provided by the Alzheimer’s Associaton in support of Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act.)

Alice and Bob are an elderly couple who are residents of Pennsylvania, but they spend their winters at a rental apartment in Florida. Alice has Alzheimer’s disease, and Bob is her primary caregiver. In January, Bob unexpectedly passes away. When Steve, the couple’s son, arrives in Florida, he realizes that his mother is incapable of making her own decisions and needs to return with him to his home in Nebraska. Florida, Pennsylvania and Nebraska have not adopted any uniform laws for determining which state should deal with Alice’s need for a guardian. 

Steve decides to institute a guardianship proceeding in Florida. The Florida court claims it does not have jurisdiction because neither Alice nor Steve have their official residence in Florida. Steve next tries to file for guardianship in Nebraska, but the Nebraska court tells Steve that it does not have jurisdiction because Alice has never lived in Nebraska, and a Pennsylvania court must make the guardianship ruling. If these three states adopted a uniform set of laws which specified which state should have jurisdiction of Alice’s case, the Florida court initially could have communicated with the Pennsylvania court and directed Steve to the proper forum. 

The situation can be even more complicated, expensive, and destructive to a family when multiple children get involved.  If the siblings do not agree, lawsuits may be filed in multiple jurisdictions while allegations of “granny snatching” start flying.

There is a path to simplifying the multi-state issues that arise when an adult needs a guardian. The Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA) has been enacted in a majority of states (but not in Pennsylvania as of May 5, 2012). UAGPPJA addresses the many problems relating to multiple jurisdiction, transfer, and out of state recognition.  It establishes a roadmap for communication, uniformity and reciprocity between states. It includes a requirement to recognize guardianship decisions that occur in a different state and provides direction on how courts should handle guardianship cases that span state boundary lines. But it can only work when all the states involved have adopted the uniform law. 

Now Pennsylvania appears poised to enact UAGPPJA. House Bill 1720 will adopt the uniform jurisdiction law in Pennsylvania.  It passed the House by a unanimous vote (196-0) on October 26, 2011. The bill is now awaiting concurrence by the Pennsylvania Senate. 
House Bill 1720 of the PA version of the UAGPPJA is organized into five Subchapters:
·        Subchapter A (Sections 5901 to 5906) contains definitions and provisions designed to facilitate cooperation between courts in different states.
·        Subchapter B (Sections 5911 to 5919) is the heart of the Act. It lays out the rules for determining which court has jurisdiction to appoint a guardian. The goal is to clearly locate jurisdiction authority in one state alone except in cases of emergency or in situations where the individual owns property located in multiple states.
·        Subchapter C (Sections 5921 and 5922) specifies a procedure for transferring guardianship proceedings from one state to another.
·        Subchapter D (Sections 5031 and 5932) deals with enforcement of guardianship and protective orders issued in other states.
·        Subchapter E (Sections 5991 and 5992) contains boilerplate provisions which are typical of uniform laws.

HB 1720 is an example good government at work. Readers of this blog may wish to contact their state Senator to urge passage of this important legislation as soon as possible. You can find your Senator and learn how to contact him or her by clicking here.

Additional Resources: