Special Needs Trusts Address Long-Term Disabilities

On August 19, 2009, Michael A. Cassidy, Esq., of Tucker Arensberg, P.C., posted an entry on the Med Law Blog, entitled "Special-needs trusts can provide for disabled children."

He highlighted an article of the same title published the day before by the Pittsburgh Post-Gazette.

I repost it, since the topic is so important to families of disabled or handicapped children, and the article is excellent.

The Pittsburgh Post Gazette recently ran an article entitled "Special-needs trusts can provide for disabled children".

This article highlights an essential planning tool for individuals with special needs and their loved ones, but also the complexity of such planning. Special needs planning requires a strong estate planning foundation in addition to a working knowledge of public benefits eligibility rules.

The article notes that "anyone receiving Social Security disability benefits cannot have more than $2,000 in his own name without losing the benefits." An often misunderstood concept is the distinction between Social Security Disability Insurance (SSDI) benefits and Supplemental Security Income (SSI) benefits.

Both SSDI and SSI require that a recipient be "disabled" as defined under the Social Security Act. However, SSDI is an entitlement benefit based an individual's earnings history whereas SSI is a means-tested benefit. SSDI, therefore, requires no inquiry into an applicant's countable resources where as SSI generally applies a $2,000 resource limit.

In Pennsylvania, an individual who qualifies for SSI typically automatically receives Medical Assistance (Medicaid) benefits, which is often the most sought after of the means-tested public benefits.

For children with disabilities, Medical Assistance can serve as a primary or secondary insurance. If used as a secondary insurance, Medical Assistance often provides vital care rarely covered by employer-provided insurance, such as behavioral health wraparound services, in-home nursing/therapies/personal care, diapers, nutritional supplements and transportation. Children in Pennsylvania may qualify for Medical Assistance regardless of their eligibility for SSI and, in certain instances, their parents income.

I am aware from my involvement in past and current cases preparing, or seeking court approval of, special needs trusts, that the warning in the article should be heeded:

But recent rule changes have made the proper drafting of these trusts more important than ever. Several challenges to improperly worded trusts have caused government benefits to be denied to trust beneficiaries. * * *

How I Survived My Summer Vacation

I have not posted on this Blog since July 20th, because I could not. Two days later, while on vacation in Ocean City, Maryland, I experienced a sudden and severe accident in the surf that resulted in emergency spinal surgery at the University of Maryland's "R. Adams Cowley Shock Trauma Center", in Baltimore. Since July 30th, I've been recovering at home.

The surgeon, Dr. Bizhan Aarabi and his associates, assure me that I should attain a full recovery, perhaps even enjoy better health than before the accident. This requires, however, that I continue to wear a protective cervical collar for another two months.

While so many politicians and patients lately question or criticize our health care system, I am one fortunate patient who was restored through it; and I am grateful.

On August 17, I sent an e-mail message to some folks, and I expressed this gratitude:

My 58th birthday was yesterday. It was very special. The present given to me was a new lease on life. I give thanks to G-D for my salvation & restoration into life here; to my wife, children, & siblings for their combined sacrifices & support at the Center and here at home; to the medical professionals and the insurance carrier for their care provisions; to the Firm and my co-workers for their understanding, faith, expectations, and support; and to my clients and friends, who have responded so caringly.

To my "biography" I can now add the comment "trauma survivor." I am one of the luckiest ones. I shall not forget the others.

Recently I joined online, as a "trauma survivor," the Trauma Survivors Network co-sponsored by three regional specialized trauma centers, as conceived by the Cowley Center in Baltimore.

The Trauma Survivors Network (TSN) is a community of patients and families who are looking to connect with one another and rebuild their lives after a serious injury.

The American Trauma Society (ATS), the leading organization advocating for the injured and their families, in partnership with hospitals around the country, is committed to growing the TSN by providing the programs and resources patients and families tell us they need to manage their recovery and improve their lives.

The underlying goal in all of these programs and resources is helping trauma patients and their families connect and rebuild their lives following a serious injury.

Now, I feel strong enough to resume some work efforts, including resumption of periodic postings to this Blog.

Future postings likely will include more consideration of catastrophic medical conditions, such as the one that touched me. None of us is immune from an accident that would radically alter our life; and none of us should forget those whose lives have been so altered.

New Cause of Action under FINRA Found

A decision issued on June 30, 2009, by a three-judge panel of the U.S. Third Circuit Court of Appeals, in Sarah Grammer v. John J. Kane Regional Centers-Glen Hazel (PDF, 23 pages), likely will impact nursing home and rehabilitation facilities that provide care subject to the Federal Nursing Home Reform Amendments (FNHRA).

The decision reversed a ruling by the United States District Court for the Western District of Pennsylvania, and, by its fresh interpretation of FNHRA, recognized new causes of action under those amendments to federal law.

The decision was noted by Professor Katherine C. Pearson, who is the Director of the Elder and Consumer Protection Clinic, of Penn State - Dickinson School of Law, and who now is Chair of the Elder Law Section of the Pennsylvania Bar Association. She sent me an email message with a link to her web article about the decision, and granted me permission to repost it. I do so now (reparagraphing & links applied), with thanks to her.

Should Federal Standards for Care by Nursing Homes be Enforceable
by Private Suits for Damages under Federal Civil Rights Laws?
The Third Circuit Says Yes.

by Katherine C. Pearson

Advocates for elders and disabled persons in nursing homes have long been frustrated by the absence of an express cause of action in federally imposed “Nursing Home Residents Rights,” a key feature of the Nursing Home Reform Act (NHRA) at 42 U.S.C. § 1396r.

On June 30, 2009, however, the Third Circuit Court of Appeals ruled in the case of Sarah Grammer v. John J. Kane Regional Centers-Glen Hazel that a private cause of action does exist under federal civil rights laws, at 42 U.S.C. § 1983, for violation of the resident’s rights under the NHRA. State action, necessary for a civil rights suit, existed because the defendant facility was a county-operated home.

In 1987, Congress enacted key nursing home reform laws in an effort to respond to widespread complaints about quality of care in facilities that were accepting Medicare and Medicaid dollars. Until that legislation, it was not uncommon to hear complaints about aged residents routinely being restrained in beds or chairs to prevent wandering, or being heavily medicated solely to make the residents easier to “manage.”

The Nursing Home Reform Act for the first time mandated that with the exception of emergencies, a doctor’s detailed, written order would be required before physical or chemical restraints could be imposed, and then only when necessary for the physical safety of the residents. The federal law mandated that facilities must care for residents “in such a manner and in such an environment as will promote maintenance or enhancement of [their] quality of life. . . .”

The legislation was widely hailed as ushering in a new era of accountability for institutional caretakers. But individual residents and their families have frequently questioned whether administrative sanctions for violations of the law, such as civil fines or threats of defunding, are sufficient to protect residents.

In the Grammer case, the complaint alleged breach of the duty to ensure quality care under NHRA standards, citing the death of Melviteen Daniels from poor care that resulted in malnourishment, decubitus ulcers and sepsis, and alleging the cause of action under 42 U.S.C. § 1983.

The District Court in the Western District of Pennsylvania dismissed the complaint for damages, finding no cause of action existed at law.

The Third Circuit reversed in a 2 to 1 ruling. In the majority opinion, Circuit Judge Nygard gives a detailed explanation of how the NHRA should be recognized as unambiguously conferring federal, substantive rights on residents to quality care, rights that are enforceable under federal civil rights statutes.

The dissent notes that the NHRA was enacted as part of an Omnibus Budget bill, pointing to Supreme Court decisions that have rejected attempts to infer substantive rights from “Spending Clause” cases.

The Third Circuit's decision in Grammer opens new doors for recovery on behalf of older adults and disabled persons in public facilities, including the potential for attorneys' fees for successful civil rights claimants.

The outcome also suggests a new question, whether privately-owned nursing homes are also subject to a civil rights suit for violations of NHRA-mandated standards of care. Are private owners operating under color of state law when they are certified as Medicare and Medicaid qualified facilities and accept public dollars for their services? At a minimum, does the existence of a federal cause of action against public facilities strengthen the argument by resident-advocates that violation of federal standards constitutes "negligence per se" for common law tort claims?

Another open question is whether mandatory arbitration provisions in nursing home admission agreements will be treated as limiting or barring courtroom litigation of federal civil rights claims.

Proposed New PA "Department of Aging and Long-Term Living"

A brief news item entitled "Bill would expand Aging department's oversight" by Scott Gilbert, posted on July 16, 2009, by WITF (Harrisburg, PA), noted the proposed restructuring of the Pennsylvania Office of Long Term Living (OLTL) into the Pennsylvania Department of Aging (DoA)

All long-term living facilities, for seniors and younger people alike, may soon fall under one state agency.

The departments of Aging and Public Welfare currently share oversight of the Office of Long-Term Living. But the House has approved and sent on to the Senate a measure that would create the Department of Aging and Long-Term Living.

Crystal Lowe, who heads the Pennsylvania Association of Area Agencies on Aging, says the move makes sense.

Among the functions that would be shifted out of DPW is the licensing and regulation of personal-care homes and assisted-living facilities. Lowe says her group supports the legislation, provided the merger would not diminish the Aging department's ability to advocate on issues unique to seniors.

The proposal was discussed at a meeting, held May 28, 2009, of the Medical Assistance Advisory Committee (MAAC) of the Pennsylvania Department of Public Welfare, when a resolution was adopted anticipating the organizational move of OLTL from DPW, to the DoA.

The Consumer Subcommittee made a motion that the Memorandum of Understanding formalize the role of the MAAC and the MAAC Subcommittees to continue to serve in an advisory capacity on the MA Programs that are moved to the Department of Aging and Long Term Living and that includes having someone come to the MAAC, not only to give reports, but to provide draft documents for comment and discussion for the MAAC to provide an advisory role independent of other committees.

It appears that the DoA anticipates receiving the prime role of addressing long-term care needs in Pennsylvania, as explored in its recent Summit held in State College.

A Press Release, entitled "PA Department of Aging Explores Needs of Older Adults at Senior Center Summit" (06/30/09), noted an information-gathering process that focused on the role of the existing senior centers statewide.

The Pennsylvania Department of Aging and the Long-Term Living Training Institute have heard valuable insight from experts in the aging field and older adults during a two-day conference attended by over 300 professionals and consumers.

Pennsylvania has over 600 senior centers where older citizens go for support, camaraderie, meals and access to important information about programs that can help them.

“Senior centers offer a lifeline for many older residents who otherwise would be isolated,” said Department of Aging Secretary John Michael Hall. “Pennsylvania seeks to improve programs and access to centers across the state and to find innovative ways to make them more appealing, efficient and worthwhile for members.”

Discussion groups focused on the changing role of senior centers, fundraising techniques, creating a business plan and making the centers better places for older residents to go. Objectives of the meeting include improving ways to transport seniors to centers in rural and suburban areas and finding more and better ways to sustain operations in a cost-effective way.

The legislation that would accomplish the restructuring is PA House Bill 1152, presently in Printers No. 2212 (28 pages in PDF format), which is summarized simply as "An Act establishing the Department of Aging and Long-Term Living and providing for its powers and duties; and making related repeals."

According to its Legislative History, HB 1152 was introduced on March 31, 2009, approved by the House on June 30th, and then was referred immediately, in the Senate, to its Aging & Youth Committee.

Very relevant to the discussion about regulation of personal care homes in Pennsylvania is Section 4's empowerment that, among other missions, the proposed, newly-named "Department of Aging and Long-Term Living" shall administer and supervise a domiciliary care program for adults.
More specifically, under Subsection 9.1, the new DA/LTL shall: "License and regulate personal care homes and assisted living residences under all powers previously granted to the Department of Public Welfare as provided in Articles II and X of the act of June 13, 1967 (P.L.31, No.21), known as the Public Welfare Code."

The new DA/LTL would also handle programs for Pennsylvanians who are older or who have disabilities. Section 4, in Subsection 10, provides that it shall "[a]dminister and supervise an attendant care program for people with disabilities under the act of December 10, 1986 (P.L.1477, No.150), known as the Attendant Care Services Act, and any related home and community-based services waiver for older adults and people with disabilities."

The legislation also projects a sweeping vision for long-term living in Pennsylvania.

Section 4, Subsection 12, provides that the new DA/LTL shall:

In cooperation with the area agencies, Federal, State and local agencies that support people with disabilities and older adults, service providers, centers for independent living and support organizations, work toward the development of a continuum of home and community-based service, transportation and housing options for older adults and for people with disabilities designed to maintain them in the community and avoid or delay institutional care when clinically appropriate.

The department shall ensure that consumers are made aware of the availability of nursing facility services or other residential settings when identified as a clinically appropriate option.

System development activities shall include coordinating the Commonwealth’s plans for the provision, expansion and effective administration of all of the following:

(i) In-home services that recognize consumer choice, including personal assistance and supportive services, which shall include consumer-directed services.

(ii) Housing options such as service-enriched housing options, personal care homes and assisted living residences and nursing facility services, when clinically appropriate.

(iii) Special services to caregivers who support people with disabilities and older adults, recognizing the important role that families play in helping older adults and people with disabilities to live independently.

(iv) Adult daily living center services, respite services and other community-based services to support caregivers.

(v) The promotion of informal community supports.

(vi) Comprehensive and ongoing assessment programs.

(vii) Counseling programs to assist individuals in determining appropriate long-term living services.

(viii) Special advocacy efforts to promote greater awareness of, and more effective response to, Alzheimer’s disease and other related dementia.

(ix) Activities and services at community senior centers.

(x) Wellness and preventive health programs.

Although this may appear initially as an organizational shuffle, I think that it represents more.

This is a potential restatement by the legislative and executive branches as to who, in state government, will work in a coordinated effort on issues of older and disabled Pennsylvania citizens far into the future.

PA's "Filial Responsibility" Law in the News

Within the past few days, major media -- the Philadelphia Inquirer and ABC News -- published accounts about Pennsylvania's filial responsibility law, drawing attention to the desperation caused in some families in the Commonwealth who are compelled to support their parents' costly care needs despite their disconnection or their best efforts.

The Inquirer, from Philadelphia, published its article, "If mom can't pay, adult child must", by Monica Yant Kinne, on Sunday, July 12, 2009; and ABC News, from New York City, published its article, "Pay Your Parents' Bills or Else -- Little-Known State Laws Force Some to Pay Their Parents' Nursing Home Bills" by Alice Gomstyn, on Wednesday, July 15, 2009.

The Inquirer article told the story of Don Grant, of Havertown, Pennsylvania, who was sued for care costs incurred by his mother:

This one's going to blow baby boomers' minds. It concerns a little-known law dating to Elizabethan England suddenly being enforced with gusto in Pennsylvania. The law can force adult children to pay their parents' health-care costs. If Mom and Pop can't pay, you pay. If they have the money but refuse to pay, you pay.

If you don't, watch your credit rating sink under the weight of a legal judgment that will haunt you for life.

It happened to Don Grant. It can happen to you.

The Havertown man is nearly 50 and struggling to pay his mortgage and $100,000 in student loans incurred by his daughter, a recent Albright College grad.

Last year, Grant was sued because his mother, Diana Fichera, did not pay an $8,000 bill at a Delaware County nursing home, where she rehabilitated after surgery.* * *

Don Grant's mother was disassociated from him, and incurred substantial bills at care facilities. However, one care facility utilized Act 43 (recodified in Pennsylvania law in 2005), as a legal ground to sue him as her responsible family member.

The ABC News article told the story of Andrea August, of Norristown, Pennsylvania, who was also sued for care costs incurred for her mother:

Could you be sued for your parents' unpaid health care bills? It happened to Andrea August.

One spring day, the 39-year-old Pennsylvania woman was stunned to learn that a nursing home was suing her for more than $300,000 in unpaid bills related to her father, who died after spending about a year in the home, and her mother, a dementia patient still living there.

"I was devastated," August said. "We're living basically paycheck to paycheck. We don't try to live beyond our means -- it was just unbelievable that all of a sudden there was this debt hanging over us."

August said that both she and her husband work two jobs each to make ends meet for themselves and their two children. She loves her parents, she said, and did what she could to help them. But footing their bills was out of the question.

"I don't think anybody should be responsible for someone else's bill," she said. "You can only do so much."

August found herself among a growing number of adult children facing legal pressure to pay their parents' medical bills. * * *

Both articles deliver excellent reviews about the "filial support" concept, which derived from English law in the 1600s, was transported into Colonial laws, but fell into disfavor and disuse with the introduction of the federal Medicare and Medicaid systems in the mid-sixties.

Both articles note how the precarious financial situations of care facilities and the funding problems of the federal systems now lead providers to invoke those prior laws, particularly in Pennsylvania, due to the 2005 reenactment, which followed issuance of a Superior Court decision in Presbyterian Medical Center v. Budd, 832 A.2d 1066 (Pa. Super. 2003). 

Elder law attorneys have known about, and have opposed, the impact of Act 43 since its reenactment in 2005 into Pennsylvania's Domestic Relations Code, 23 Pa.C.S.A. § 4603 regarding "Relatives' liability" (unofficial form) and its supporting Regulations ("Actions for Support").

I noted the problems that a spotty enforcement of such a law could create for families, and provided further references. See: PA EE&F Law Blog post "Filial Support" in PA? Really?!? (07/28/08). See also: "Should you worry about your parents' debts?" by Liz Pulliam Weston, posted on MSN Money; and "Paying for Mom: Little-Known Laws Force Families to Fund Parents’ Care" (01/10/09) by Beth Baker posted by the AARP Bulletin.

My post quoted Professor Katherine C. Pearson, who is the Director of the Elder and Consumer Protection Clinic, of Penn State - Dickinson School of Law, and who now is Chair of the Elder Law Section of the Pennsylvania Bar Association.

She was quoted in both the Inquirer and ABC News articles, too.  

These articles appear just as federal health care insurance proposals air nationally. Such reform should take in account remaining state filial responsibility laws, and address, at minimum, the procedural rights that should be afforded to those being charged with care costs of family members.

However, until the situation of "filial support" is clarified -- particularly in Pennsylvania -- anyone receiving an Act 43 demand from a care facility regarding costs incurred by a family member must be vigilant. Never brush off such a demand, or else you run the risk of becoming the star of another article about filial support.

Graphic Source: AARP Bulletin

Update: 2012-06-11:

See PA EE&F Law Blog posting Filial Support of Indigent Parents in PA (06/11/2012) regarding a recent Superior Court decision that addressed the filial support statute in Pennsylvania.

"Growing Old in America" Report by Pew

On July 7, 2009, the SmartTalk radio discussion program, offered by Public Broadcasting System affiliate WITF-FM (Harrisburg, PA), presented the topic "The New Generation Gap" with guest Kim Parker, a Senior Researcher at Pew Social & Demographic Trends, of the Pew Research Center.

The generation gap. It sounds like a relic of the 1960s when young Americans rebelled against the traditions and lifestyles of their parents and anyone older than 30.

Since then, much has changed. Today, children are closer to and more open with their parents. But what has emerged recently though is a divide in attitudes, especially toward social issues, between the generations.

A recent study by the Pew Research Center finds a new generation gap when it comes to issues like gay marriage. What are the issues younger and older people differ on the most? * * *

The basis for the program was a report issued June 29, 2009, by the Pew Research Center, entitled "Growing Old in America: Expectations vs. Reality" regarding its research conducted between February 23 and March 23, 2009, through focus groups convened in Baltimore, Maryland.

This is the "executive summary":

Getting old isn't nearly as bad as people think it will be. Nor is it quite as good.

On aspects of everyday life ranging from mental acuity to physical dexterity to sexual activity to financial security, a new Pew Research Center Social & Demographic Trends survey on aging among a nationally representative sample of 2,969 adults finds a sizable gap between the expectations that young and middle-aged adults have about old age and the actual experiences reported by older Americans themselves. * * *

AARP noted the study in its posting of an Associated Press article entitled "Study: Generation gap in US largest since 1960s" by Hope Yen (06/29/09). The article contrasted views of younger versus older people, as revealed in the Report, on such key beliefs as morality, religion, and politics:

Almost eight in 10 people believe there is a major difference in the point of view of younger people and older people today, according to the independent public opinion research group. That is the highest spread since 1969, when about 74 percent reported major differences in an era of generational conflicts over the Vietnam War and civil and women's rights. In contrast, just 60 percent in 1979 saw a generation gap.

Asked to identify where older and younger people differ most, 47 percent said social values and morality. People age 18 to 29 were more likely to report disagreements over lifestyle, views on family, relationships and dating, while older people cited differences in a sense of entitlement. Those in the middle-age groups also often pointed to a difference in manners.

Religion is a far bigger part of the lives of older adults. About two-thirds of people 65 and older said religion is very important to them, compared with just over half of those 30 to 49 and 44 percent of people 18 to 29. * * *

As to the characteristics of the newest "generation gap," it was noted by Paul Taylor, Director of the Pew Social and Demographic Trends Project, that "[t]oday, it's more of a general outlook, a different point of view, a general set of moral values."

For prior surveys and reports by the Pew organization on the topics of demographics and population aging, see: "Reports on Generations."

The guest on the recent SmartTalk program, Senior Researcher Kim Parker, led the full Social & Demographic Trends staff in preparing the survey questionnaire and then in analyzing the findings. She also wrote Sections I, II and III of the Report. So she was a knowledgeable guest -- and a good speaker, too.

Wisconsin Public Radio had featured Kim Parker in an earlier discussion program about the same topic, broadcast on July 2, 2009; but to listen now, you must be a member.

Graciously, WITF-FM made its thought-provoking, one-hour, July 7th audio broadcast available free for the clicking on its website, here.

"There was no respect for youth when I was young,
and now that I am old, there is no respect for age --
I missed it coming and going."

~J.B. Priestly
English novelist, playwright and broadcaster (1894-1984)
(per QuoteGarden)