Autism is a Controversial Issue – People Fighting Online

This is both uplifting and horrendous at the same time.

Anonymously Autistic

I left Facebook a while ago because I kept getting sucked into the arguments between parents and Autistic people, Autistic people and the anti-VAX movement, and medical professionals and Autistic people. Today I logged back in and was quickly reminded why I left.

The first thing thing that upsets me is that all of these people think they know more about Autism than Autistic people, as if our first hand experiences are of little or no value. This is often parents but can also be medical professionals and organic health nuts (I eat organic but these people are extreme).

Cure culture fanatics telling us we are sick for wanting to stay Autistic – sick for wanting to stay the way we were born. Parents telling us we don’t understand because we are not like their child (some of us WERE at one point and have worked hard to improve as…

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Congress Does Something Good

After many years of advocacy by the National Academy of Elder Law Attorneys and other advocacy groups for persons with disabilities, such as the Special Needs Alliance, the Special Needs Fairness Act of 2015, S. 349, was signed by President Obama on December 13, 2016. The Act allows persons with disabilities to create their own special needs trusts under 42 USCA 1391p(d)(4)(a) if they have the capacity to do so. The pending legislation was previously discussed in this blog.

The Special Needs Fairness Act addresses a problem for many persons with disabilities. Special needs trusts allow a person with a disability to set aside assets to supplement daily living expenses and provide additional care when government benefits are not sufficient. Prior to the enactment, such trusts could only be settled by a parent, grandparent, guardian, or the court, even when the person was not legally incapacitated. When there was no family member or guardian to act as settlor, filing a petition to have the court act as settlor was a purposeless formality that added considerable expense to the process and burdened overworked courts unnecessarily.track-star-mod

It is significant that no court action was necessary when a parent or grandparent acted as settlor of the Special Needs Trust. Requiring a court to establish the trust solely due to the unavailability of a parent or grandparent was an unfair restriction for a person with a disability in the exercise of his or her rights. The Special Needs Alliance supported the legislation, stating, in part, as follows:

Often, our members are called upon to assist persons with disabilities in creating special needs trusts, as provided in 42 U.S.C. §1396p(d)(4)(A). Unfortunately, this section does not permit a capable person with special needs to create his or her own trust, limiting the class of trustors to the person’s parents, grandparents, a guardian or the Court. Since adults often outlive their parents and grandparents, many persons with disabilities have no alternative but to expend unnecessary time and money to go to a Court to ask a judge to create the trust for them. This restriction fails to recognize that persons with disabilities should have rights equal to nondisabled citizens where possible, and it continues the traditional denigration of persons with disabilities.

The Act should have been a slam dunk. It relieves persons with disabilities of a major expense. The initial court action to establish a special needs trust typically costs $2,500 or more in legal fees and court costs. After the trust is established, many courts require annual accounts to be filed, costing another $1,500 to $2,500 per year. This was a prohibitive expense because special needs trusts are often created to preserve small amounts. Although benefitting many deserving persons, none of whom would be undocumented aliens, the Act costs the government nothing. That such a logical, fair, nondiscriminatory, beneficial law made it out of Congress provides a tiny glimmer of hope for more sanity in government.

John B. Payne, Attorney
Garrison LawHouse, PC
Dearborn, Michigan 313.563.4900
Pittsburgh, Pennsylvania 800.220.7200

©2017 John B. Payne, Attorney

Vital Information about Medicaid and Long-Term Care

Please read this crucial explanation of the importance of Medicaid to long-term care residents and their families from the Long Term Community Coalition:  ltccc-medicaid-middle-class

Michigan Designated Funeral Representative

A new law, 2016 Publ. Act 57, effective June 27, 2016, authorizes a person identified as the declarant, to designate a funeral representative to make decisions about postmortem funeral arrangements and the handling, cremation, disposition, or disinterment of the declarant’s body. MCLA 700.3206(2)(a).  The Act includes authority for cremation and determination of the right to possess the cremains, which is an important change. Under prior law, all persons with equal priority as next of kin had to approve cremation.

The Act revises the priority of persons who may decide on final arrangements and inserts a “designated funeral representative” ahead of spouses, family members and others. MCLA 700.3206(3). The only authority with higher priority is a person designated to direct the disposition of a service member’s remains under federal law or Department of Defense regulation, when the decedent was a service member at the time of death. Id

Historic reenactor Les Scott, dressed as the town mortician at the door of his funeral parlor at South Park City Museum, a collection of historic buildings in Fairplay, Colorado

Historic reenactor Les Scott, dressed as the town mortician at the door of his funeral parlor at South Park City Museum, a collection of historic buildings in Fairplay, Colorado


A funeral representative designation may be included in another estate-planning document, such as a will or designation of patient advocate, but it must be executed with two witnesses or be notarized. MCLA 700.3206(2)(b). Like a designation of patient advocate, a funeral representative designation may not appoint or be witnessed by a person associated with a declarant’s medical provider, and persons associated with a funeral establishment, cemetery, or crematory that would provide services for the declarant are also excluded. MCLA 700.3206(2)(c).

A funeral representative designation may be revoked by the declarant, or by the representative’s resignation, absence despite reasonable efforts to locate, or refusal act within 48 hours of receiving notice of the decedent’s death. Revocation by the declarant must be in writing and signed with the formalities of the original designation. MCLA 700.3206b.

The declarant may appoint a contingent representative. MCLA 700.3206a(1). The represtentative accepts the appointment by signing an acceptance or by acting as the funeral representative. MCLA 700.3206a(2).

mortuaryCircumstances that would bar an individual from inheriting from the declarant, such as divorce or annulment of marriage to the declarant, desertion disqualify the individual. MCLA 700.2801(2).  Being convicted of abuse or killing of the declarant, disqualifies the individual, MCLA 700.2802(2)(c), and being charged with the abuse or killing of the declarante bars the individual from acting as the designated funeral representative while the charges are pending. MCLA 700.3206(12).

A major concern for an individual nominated to act as designated funeral representative is personal liability for the declarant’s final arrangements. Unless he or she is a special fiduciary, the medical examiner, or the director of corrections in the case of a prisoner, a person who acts as designated funeral representative is personally liable for the costs of disposition to the extent that payment is not covered under a trust, prepaid funeral contract, or other “effective and binding means.” MCLA 700.3206(13). This is alarming because the statute includes no requirement for the funeral director or other provider of funeral or burial services to advise the nominated funeral representative that if he or she accepts the appointment and makes the necessary dispositions that there could be personal liability. The representative is not even required to sign an acceptance of appointment, if he or she accepts by performance.

Adapted with editorial changes from John B. Payne, “Michigan Probate, 2016-17 ed.,” Chapter 13, 125-27 (Thomson Reuters 2016).

John B. Payne, Attorney
Garrison LawHouse, PC
Dearborn, Michigan 313.563.4900
Pittsburgh, Pennsylvania 800.220.7200

©2017 John B. Payne, Attorney

Repealing the Affordable Care Act

Without spin or editorializing on the issue, here are some facts from The Center for Medicare Advocacy,, about the program Congress plans to repeal:

  • The uninsured percentage of Americans under 65 is the currently the lowest in decades. Beginning in 2014, the rate dropped from 16.6% to 10.5%.
  • As of March 31, 2016, 11.1 million people have coverage through the ACA Marketplace.
  • As of 2015, 11 million people in 31 states and the District of Columbia had coverage through Medicaid expansion under ACA, out of a total of 81 million on Medicaid.
  • There are 19 states that did not expand Medicaid: Alabama, Florida, Georgia, Kansas, Idaho, Maine, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina, South Dakota, Texas, Tennessee, Utah, Virginia, Wisconsin and Wyoming.
  • However, the ACA resulted in 16,748,000 people becoming eligible for Medicaid as of September 2016.

Congress says it will replace the ACA with something better. Dare we hope?

John B. Payne, Attorney
Garrison LawHouse, PC
Dearborn, Michigan 313.563.4900
Pittsburgh, Pennsylvania 800.220.7200

©2017 John B. Payne, Attorney

Quest for Quality Care

brooklyn-convalescent-home-therapy-roomWhen it becomes necessary to look for nursing home placement for a loved one, the Nursing Home Compare tool on the website is an important starting point for screening facilities. However, it is only a starting point and it has serious shortcomings. It is necessary to do further investigating and review prospective placements.

Effective February 20, 2015, the Centers for Medicare & Medicaid Services (CMS) made some changes to Nursing Home Compare. The Quality Measures (QMs) were recalibrated, antipsychotic drug use was factored into the QM star rating, and staffing criteria were changed. These changes made the tool better, but far from excellent.

Three measures are rated: (1) health survey measure, based on unannounced annual surveys and complaint surveys conducted by state survey agencies; (2) staffing, based on self-reported nurse staffing, and (3) QMs, based on resident assessments. The weakness in the rating system is reflected in the high scores prior to the latest round of improvements. Approximately 80% of facilities received four or five stars on their QMs because high scores on the self-reported staffing measure and QMs will inflate a facility’s overall rating. According to The New York Times there was considerable gaming of the rating system. Katie Thomas, “Ratings Allow Nursing Homes To Game System; Medicare’s Five Stars; Data Taken at Face Value Often Fails to Reflect Real Conditions,” The New York Times, page 1 (Aug. 25, 2014),

The new changes include recalibration of the QMs to identify the number of points to achieve different star ratings. CMS claims that the change will raise the standard for skilled-care or long-term care facilities and differentiate the facilities to make the system more accurate. In 2009 only one in ten facilities received five stars and one- through four-star ratings were roughly equal. By 2013, one-star ratings had decreased by approximately 85% and five star ratings had increased from 10% to 35%. This is like a school that consistently awards A grades to 35% of the students. No matter how you slice it, no more than half of any student body can be above average and no more than half of LTCFs should be graded at three stars or better. After recalibration, half of all facilities will still be receiving four or five stars on QMs, which indicates a rigged system.

Four-star staffing ratings are awarded to facilities that score four stars on both the registered nurse component and the staffing category. A facility cannot receive a four-star staffing rating if either of the individual measures is three stars. Staffing had been self-graded by the facilities, which made it an unreliable measure of quality, but CMS has announced that it would require facilities to submit direct-care staffing information electronically.

All this suggests that ratings may not be relied on exclusively in choosing a nursing home. The ratings are very approximate and are based on sporadic inspections by an under-staffed federal agency.

It is necessary for the family to investigate beyond looking at the ratings. This involves visiting facilities, talking to residents’ families and employees, checking reviews on the Internet and consulting a geriatric care manager if the family can afford it.

It is not sufficient to rely on the hospital social work staff. Hospital discharge planners are generally overworked and may be under great pressure to empty hospital beds for new admissions. On Friday afternoons, discharge planners are expected to clear as many beds as possible for weekend admissions. At such times, discharge “planning” often consists of finding the first skilled nursing facility that will take the patient.

Presumably, the Joint Commission provides a standard for discharge planning, but there is almost no way for someone who is not in hospital administration to review the standard and demand that the service be properly delivered. This places the responsibility for finding a good rehabilitation facility or nursing home squarely on the shoulders of the patient’s family and friends.

While visiting skilled care and nursing facilities, try to observe resident-staff interactions, as well as the cleanliness of the facility. Take time to talk to residents and see whether those who appear distressed receive prompt care.

The 1987 Nursing Home Reform Law includes many guaranteed rights for nursing home residents:

A) The right to be fully informed of available services and the charges for them, facility rules and regulations, including a written copy of resident rights, contact information for the state ombudsman and state survey agency, state survey reports and the nursing home’s plan of correction, advance notice of a change in rooms or roommates, assistance if a sensory impairment exists, and the right to receive information in a language they understand.

B) The right to present grievances without fear of reprisal and with prompt resolution by the facility, to complain to the ombudsman program, to file a complaint with the state survey and certification agency, and to participate in the resident’s own care.

C) The right to receive adequate and appropriate care, to be informed of changes in medical condition, to participate in assessment, care-planning, treatment, and discharge, to refuse medication, chemical and physical restraints, and treatment.

D) The right to private and unrestricted communication with anyone regarding medical, personal, or financial affairs, and to refuse visits.

E) The right to remain in the nursing facility unless a transfer or discharge is for good cause and is preceded by adequate notice and due process.

F) The right to be treated with consideration, respect, and dignity, free of mental and physical abuse, corporal punishment, involuntary seclusion, and physical and chemical restraints, to self-determination and security of possessions, and to visits by the resident’s personal physician, representatives from the state survey agency and ombudsman programs, and by relatives, friends, and others of the residents’ choosing.

hospitalWhen visiting facilities, enquire of the admissions and administration representatives, other visitors, and staff about the facilities’ attention to resident rights. Most facilities allow free access to lobbies and common areas in the facility. It should be possible to talk to a variety of staff, contractors providing services, and other visitors. If the facility restricts access, that may be a sign that the care they provide is substandard.

Almost no one wants to go to a nursing home, but there is a high probability that the patient in skilled care will go to an LTCF at the end of rehabilitation, not home. One of the most important criteria in choosing a rehabilitation or skilled-care facility (SNF) is whether all beds are certified for both Medicare and Medicaid. Many SNFs use up the patient’s highly-profitable Medicare days, then tell the family to search elsewhere for a Medicaid bed. This makes it very difficult to find a preferred placement. Facilities are eager to accept patients who are eligible for the 20 to 100 days of skilled care that Medicare covers, but will turn away persons who rely on Medicaid.

Finding good care is a complex process. Engaging a fee-paid geriatric care manager is worth many times the cost. They can be located through the National Association of Geriatric Care Managers.  An experienced elder law attorney can also be very helpful.

John B. Payne, Attorney
Garrison LawHouse, PC
Dearborn, Michigan 313.563.4900
Pittsburgh, Pennsylvania 800.220.7200

©2016 John B. Payne, Attorney

Black Lives Matter, Too

Many of my fellow Whites see “Black Lives Matter” as meaning that police lives do not matter. That is a sad symptom of the sick state of ethnic and race relations in this country. Some who support Black Lives Matter are anti-police, just as some anti-establishment activists shouted “Off the Pigs” during Viet Nam War protests. However, those hostile and vicious thugs were and are a small minority trying to subvert the humanitarian goals of the larger movement. “Black Lives Matter” should be understood to mean, “Black Lives Matter, Too.”

I am incredibly proud of my daughters, who took in pound puppies (not the Tonka toys, but real pound puppies) and loved them until they are now better citizens than many of our high government officials and corporate CEOs. One dog, in particular, spent his first four months as a stray on the streets of Las Vegas. I cannot imagine this dog’s life as a stray in a desert city. How he found enough water to drink, let alone food, is a profound mystery.

Similarly, I cannot imagine the life of a coal miner who markwayne mullinworks grueling hours deep under ground and literally sacrifices his health to support his family. I cannot imagine the life of a farm worker who endures 14-hour days, bent over under a blistering sun, for less pay than a typical American spends on car payments. I cannot imagine the life of a gay or transgendered high school student afraid to enter a bathroom. I cannot imagine the life of an unemployed young Black or Latino in South Los Angeles. And I cannot imagine the life of a pregnant teenager in a state that makes it as difficult as possible to obtain an abortion. All of these lifes matter!

It is a huge and tragic problem that many, if not most, middle-class Whites think that they understand the lives of people who are different from them. They look at an unemployed person and assume that he or she is unemployed by choice. They see a pregnant welfare mother and assume that it is her choice to have another baby or that she does not know how to avoid becoming pregnant. They think the server who delivers their $3.49 Breakfast Special at the local hash house for sub-minimum wages works there by choice.

In truth, the coal minor, the farm worker, the unemployed Black or Latino and the server are all doing the best they can, given their opportunities and skills. Black Lives Matter is not just about Black men being shot by police. It is aimed at the gaping social inequality between the haves and the have-nots. The problem is not oppression of Blacks. It is oppression and denial of opportunity for all citizens who are disadvantaged by substandard education, physical disability, abysmal poverty, and discrimination based on race, gender identity, religion, ethnicity, and disability.

Our national leaders and the media want us to believe that the Black Lives Matter movement – to the extent that it is a movement – is a gaggle of gang members, terrorists and violent anarchists. That is their excuse to dismiss Black Lives Matter as anti-democratic and un-American because they do not want to effect change. They do not want good inner-city and rural schools nor are they willing to invest in the necessary infrastructure to make public transportation a reasonable alternative to private car ownership. They do not want affordable health care for all Americans. They hope to ignore the demands for equal opportunity and fairness and vilify and suppress Black Lives Matter the way they vilify and suppress the Occupy movement.

Black Lives Matter is not anti-police, it is pro-democracy and pro-equality. Instead of attacking Black Lives Matter, like the quasi-military forces of a tyrant cracking down on peaceful demonstrators, local police personnel should support its aims. Police officers are under the thumb of the establishment as much as anyone. They are being laid off and losing health and retirement benefits, just like employees in many fields. Furthermore, municipal police may have fairly good compensation and benefits, but they are vastly outnumbered by motivated and dedicated “security guards” who are forced to accept far lower compensation and minimal benefits.brett guthrie

A generation ago, security guards in state offices were civil servants, with reasonable wages, benefits and opportunities for advancement. Since then, the government has farmed out the responsibility for security in state and federal offices to the lowest-bidding private security companies, ensuring that the men and women securing the safety in government buildings will be paid as little as possible and deprived of even basic employee benefits. The same privatization (employee privation) is happening in every other government or corporate sphere that the plutocrats and autocrats in charge can rationalize. Even highly-trained and educated professionals are being downgraded to the status of casual labor, lacking benefits and the ability to negotiate the conditions of their employment.

Black Lives Matter is not just about Black men shot by police. It is about giving equal opportunity to children and adults who are Black or Latino or Muslim or LGBT, or who have disabilities. It is about ending voter suppression and living up to the ideals expressed in the Declaration of Independence and the rights guaranteed by the Constitution.

John B. Payne, Attorney
Garrison LawHouse, PC
Dearborn, Michigan 313.563.4900
Pittsburgh, Pennsylvania 800.220.7200

©2016 John B. Payne, Attorney