Arizona Tries to Bully Family with Cerebral Palsy Member to Cut Costs

This anecdote comes from a local Arizona Dept. of Developmental Disabilities (DDD) case worker’s decision to refuse to continue attendant care benefits to a wheelchair bound person suffering from Cerebral Palsy (CP). I learned about it from an advocate for the family involved.

Everyone is already aware that funding for the disabled in Arizona has been slashed as a result of the economic downturn (and the utter failure of state government to put aside funds during Arizona’s real-estate bubble heyday for the inevitable downturn—every penny from property taxes was spent before it was even collected, thanks Janet Napolitano!). Across the board reductions in certain programs and the complete elimination of others explain how some of the cuts were achieved, but here is an example of the dirty underbelly of the state system which very much resembles what I reported on a few months ago from an Ohio case.

A few months ago a DDD case worker was doing the annual review of her CP client, and without warning suddenly announced that she was cutting 100% of the family’s Medicaid funding for “attendant care”. This person requires assistance with virtually all of her life skills, including bathing, dressing, brushing hair and teeth, etc. Attendant care is the funding which enables a family to obtain assistance for such care. This person had been receiving approximately 180 hours a month in attendant care ever since she began receiving Medicaid. No explanation was given to the family, which then sought the assistance of an attorney.

The attorney pursued the matter through the 2 levels of administrative appeal (inside DDD’s own organization), where appeals are routinely turned down. This forced the attorney to file suit in Superior Court for denial of the person’s rights guaranteed under federal and state law. DDD filed an Answer denying that the family’s rights had been violated and the case was scheduled for trial. What happened next puts Arizona right next to Ohio on the Wall of Shame.

The attorney for the state rushed over to the family’s attorney with a settlement agreement in his hand moments before the trial was to begin. As in the Ohio case (see my Nov 28, 2012 post), the key issue for the state of Arizona, whose bluff had been called by a family willing to bear the costs and mental anguish of the litigation process, was to prevent the case from being publicized. The family got all of their attendant care benefits restored retroactively, but were barred from speaking about the matter forever. Obviously the state is afraid that if it becomes known that they are using intimidation and the internal appeals process (where the family always loses) to deny legal rights to persons with disabilities they will face a deluge of litigation which they can not win.

Families receiving government benefits for a disabled family member need to be aware of these unscrupulous tactics.



In a landmark decision a federal district court in the class action case of Jimmo vs. Sibelius has entered a proposed settlement order which finds that it is improper for Medicare to deny skilled nursing care services to applicants based on the fact that their condition is not likely to improve. (a full report can be found here:

This ruling will have an immediate benefit for all persons covered by Medicare who were denied skilled nursing facility (SNF), home health (HH) or outpatient therapy (OPT), services because of a lack of improvement potential. Affected persons should consider re-applying for benefits at this time. This change will be reflected in a revised Medicare Benefit Policy Manual which will be published after final approval of the proposed settlement by the court. A Fairness Hearing to determine whether to grant final approval is scheduled for January 24, 2013, and it is expected that the court will grant final approval after this hearing.


This ruling may also provide support for Arizona recipients of ALTCS habilitation services who have had their services cut by DDD case workers because the recipient was not demonstrating improvement in reaching their stated goal. As families with members who suffer from autism and other disabilities know, one of the primary benefits of habilitation is the retention of learned skills. Skills that were gained after years of effort can easily be lost through regression when educational efforts are discontinued. Thus by analogizing from Jimmo (above), it is improper to apply an “improvement standard” to habilitation services. The state is actually hurt financially when a disabled person regresses, since the self-help skills which are lost end up being replaced by additional state-supported care. This argument was an important consideration for the court’s decision in Jimmo, where it was demonstrated that patients who are denied skilled nursing services end up requiring full time nursing home care much sooner than if the services were provided, regardless of the lack of improvement.

Agency with Choice: Roll-out of new service causes confusion in Arizona

This past August my wife and I, as members of the Down Syndrome Network (DSN), received a series of emails which included an excerpt of a bulletin from AHCCCS (the state Medicaid agency in Arizona) which set off alarm bells. The announcement we received from DSN contained this snippet concerning some new rules:


In the initial notification we sent you from AHCCCS, we informed you that an individual cannot be paid to provide services AND ALSO serve as a member’s individual representative. “Individual representative” is defined as a parent, family member, guardian, advocate, or other person authorized by the individual to serve as a representative in connection with the provision of services and supports.

You cannot be both an individual’s representative and a paid caregiver for that individual. If you want to give up your role as the individual’s representative, you can continue to be paid.”

This message understandably upset many individual representative/caregivers, especially single parents who, like a client of mine, rely on the income they receive for providing services to their disabled child but have no spouse or partner to serve as individual representative. The individual representative is the person who negotiates with DDD each year during the ISP (Individualized Service Plan) negotiations. In the past several years DDD has used these negotiations to cut services (and thus income to the provider) and only those families with a motivated representative willing to negotiate vigorously with DDD were able to keep these cuts to a minimum.

An email went out among parents to lobby against the new rule: “NOW IS THE TIME TO RALLY!!…If we overwhelm AHCCCS with people and media coverage, hopefully someone will take us seriously…”

When our family had its quarterly review with our DDD support coordinator in mid-September we asked about this issue and were told, “I’m not able to make any comment.”

We heard nothing further from DDD until this past week when we received a document which seems to clarify the situation. A new model of delivering services entitled “Agency with Choice” will be offered from Jan. 1, 2013, which offers individuals receiving home based attendant care, personal care, habilitation or homemaker services the opportunity to enter this program and thereby have a role in selecting the service provider and directing his or her duties.

For those who do not choose this self-directed program nothing changes. There are no additional services being offered by the program and for families where the member has limited ability to understand or communicate there is no advantage to be gained from participating in the program, and much to be lost (the parent caregiver could not continue in the role of advocate, as explained above).

What is still left unexplained is why this misunderstanding was allowed to occur. Hopefully no parents actually resigned from their caregiver or advocate functions based on this misinformation.

Many parents of children receiving Medicaid benefits in Arizona find dealing with DDD like wrestling with a Hydra. Like the mythological beast, whenever one problem is resolved two more grow back and take its place.

Hidden Medicaid Trap in Elder Nuptials

An unpleasant fact of life in the U.S. is the way that government regulations can leap out of the bushes to bite you when you least expect it. One prime example is in the case of a marriage between elders.

Henry was 75, healthy and retired, he had saved $600k which he held in a revocable living trust for his children and grandchildren. The love of his life, his wife Betsy, had passed away and when he met Lydia he never imagined that romance might bloom again. But it did, and Henry and Lydia, who had no assets of her own, were married shortly thereafter.

What Henry hadn’t counted on was the effect of Medicaid rules on his trust funds when Lydia became ill and was diagnosed with Alzheimer’s disease. When Henry contacted the state Medicaid agency to begin the application process for Lydia he discovered that as a Community Spouse he was expected to “spend down” his trust to about $113k, decimating the inheritance he and his first wife had built up for so many years for their children, before Lydia would become eligible for government benefits.

When Henry contacted an attorney he had difficulty believing that there was no way out of the dilemma. He could spend his money on home improvements, a new car, travel or anything else, but what he wanted was to live simply and save his money for his children. In desperation he asked the attorney if there wasn’t any possible solution, and he learned the brutal truth: in order to protect his financial legacy he needed to divorce Lydia!

Divorce solves Henry’s problem in that his assets would no longer be considered “available” resources to Lydia, who having no resources of her own, automatically qualifies for Medicaid. Henry still loves Lydia and there is nothing to prevent Henry from retaining his spiritual bond with her, and purchasing goods and services for Lydia which go beyond what Medicaid provides, as a way to improve the quality of her life while she is in the nursing home.

The emotional pain of being forced to choose between divorce and impoverishment is a cruel plight which takes the joy out of life for many elders. Single elders involved in a committed relationship and considering marriage need to carefully weigh the financial impact which long term care might have on their respective finances.

For many the solution is a domestic partnership, often celebrated in a church ceremony, with an agreement, formal or otherwise, about sharing expenses, but without registering a marriage. Since Arizona, like most states, no longer recognizes the common law marriage, this arrangement will not be treated by Medicaid as a marriage and will not cause the community “spouse” to have to spend down his/her assets.