GHOST

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Parents of aging autistic people often say "I can't die."  But they do.

What happens when autistic people have needs that outlive their parents? Susann Senator at Psychology Today:

Clearly, there are problems with the Mom-as-ghost approach; I understand that this is not actually an option. And yet, by paying attention to that terrible longing I have to float over Nat and guard him forever, I came up with an idea that actually has legs. I called my new idea G.H.O.S.T., "Group Home Oversight and Support Team," with the idea that members of the disability community would help out with oversight of each others' disabled loved ones by spending a little time with them.

The GHOST concept soon evolved into "General Help, Outreach, and Support Team" because that name can encompass far more people than those in group homes. Rather than just being about those living in group homes, GHOST could focus on caregivers and family members helping each other out in general but especially when it comes to spending a little time with the disabled loved one.

What is GHOST and how would it work?

It didn't take long for my idea to gain support. In particular, Cheryl Ryan Chan, a good friend and a huge community advocate proposed that GHOST become a subgroup within the Community Builders of Massachusetts TimeBank, which she is still in the process of organizing and launching. In Community Builders Time Bank groups, which exist nationwide, members “bank” time by performing tasks for other members, who would then “repay” this by contributing time and tasks of their own to the bank. For example, Jane visits Andrew in his group home and shares a snack with him. Or Jane goes to the group home to help Andrew with a clothing inventory. This means that now Andrew's family member would now have to donate the same amount of time or more to a member of the GHOST Community. GHOST members donate only what they are comfortable with, but the time they give determines the time they get. Some GHOST members might donate time in other ways in order to get another pair of eyes on their loved one, like looking after a sibling or cutting the grass of a time bank member. In other words, members commit time to gain time. If “it takes a village,” then GHOST would provide that village for families.

Guardianship and Voting Rights

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

Charles P. Sabatino at the American Bar Association:

Today under federal election law, there are only two groups that states may exclude from voting—felons and persons categorized in some way as having mental impairments. Restoring the right to vote to felons who have served their time has gained much-needed attention in recent years, but access to the polls by persons having mental impairments who are under guardianship is rarely seen as a priority inquiry. The inattention is inexcusable.

...
More recently, Pennsylvania’s Senator Bob Casey introduced the Accessible Voting Act of 2020 in Congress. The bill includes several supports to enable older adults and adults with disabilities to exercise their right to vote, including an explicit provision on voting by persons under guardianship that draws directly upon ABA policy:

A State shall not determine that an individual lacks the capacity to vote in an election for Federal office on the ground that the individual is subject to guardianship, unless a court of competent jurisdiction issues a court order finding by clear and convincing evidence that the individual cannot communicate, with or without accommodations, a desire to participate in the voting process.

While applicable only to federal elective office, the provision would have the practical effect of bending the curve dramatically even in state and local elections, bringing guardianship law closer to contemporary scientific knowledge of capacity, and helping to ensure that every American retains the right to vote. In a time when the franchise is increasingly under siege, small advances represented by this kind of legislation make a huge difference.

A 2017 table of state laws.  (See a recent change in Wisconsin.)

Carli Teproff at The Miami Herald:

At 22, Tyler Borjas had a job, a bank account and got around using Uber and Metrorail.
But he couldn’t legally vote, buy a house or make travel plans. That’s because a Miami-Dade court deemed Borjas, who has autism, “incapacitated,” and placed him under guardianship.

”I want to make my own decisions,” Borjas, who is now 25, said. “I want my rights back.”

Guardianship essentially stripped Borjas of his rights, meaning he couldn’t legally make decisions for himself, said Viviana Bonilla López, an attorney working with Disability Rights Florida, an advocacy group.

Bonilla López has set out to change that for Borjas and other adults by promoting a mechanism known as Supported Decision Making instead of guardianship. If Borjas succeeds, it’s believed he’ll be only the second person in the state to reclaim his rights back in this manner.

The Problem of Guardianship

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

Tyler Cowen at Bloomberg:

[T]he error rate for decisions about guardianship, in contrast with the medical error rate, is unknown. There is also a dearth of information about the overall numbers of autistic Americans under guardianship. In American history, lack of transparency has too often been correlated with unfairness and prejudice.

One study considered 8,713 diagnosed autistic adults in the U.S. Of that cohort, 5,025 were legally dependent, with a court-appointed custodian of some kind. Regardless of whether this is a representative sample, guardianship is by no means a rare practice. Of that group, 43.4% were listed as intellectually disabled, and about two-thirds had at least one psychiatric disorder over the course of their lifetimes (with imperfect scrutiny, the general U.S. rate registers at one half).

These numbers hardly settle the question. But they do raise the possibility that many of these adults may never have needed guardianship status in the first place.

Such a lack of transparency is shocking. Once people have lost their rights, it is not particularly easy to win them back, if only because they do not have control over their own life. How do you prove that you are capable of making your own decisions?

"School-to-Guardianship Pipeline"

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

From the National Council on Disability:

In a recently released report, new federal research examining guardianships of people with intellectual and developmental disabilities (ID/DD) finds data supporting the existence of a "school-to-guardianship pipeline" that results in people with ID/DD being placed under guardianships from their earliest years of majority rather than exploring use of less restrictive decision-making supports.

Under guardianship, an individual can have the following rights removed: the right to marry; the right to determine one's own friends; the right to vote; the right to seek or retain employment; the right to consent to a medical procedure, including a sterilization or abortion; the right to drive; the right to decide where to live; and many others.

In its latest report about these and other related findings, the National Council on Disability (NCD) – an independent federal agency that advises Congress, the President, and other federal agencies, found that school officials may be biasing parents toward pursuing guardianships over their adult children with disabilities because of the manner in which they are conveying information – and without understanding the legal implications of guardianship. Schools are the number one referral source for guardianship and a full 58 percent of people with ID/DD ages 18-22 receiving publicly funded services have guardians, most of whom will remain under guardianships for decades to come – many unnecessarily.

NCD's newest research examines whether the increased risk for people with ID/DD being under guardianships may be linked to the different ways in which states apply their guardianship laws, as well as to assumptions about the abilities of people with ID/DD to fully experience the dignity of risk. The research goes on to examine how being under a guardianship impacts one's ability to benefit from key civil rights laws. NCD's report, which relied heavily on key informant interviews and analysis of applicable existing data sets, also provides an in-depth analysis of the experience of people with ID/DD under guardianships in Washington, D.C., before and after recent guardianship reforms.

The report concludes by offering policy recommendations to states, the Social Security Administration, the U.S. Department of Education, the U.S. Department of Justice, the U.S. Department of Health and Human Services, and state courts.

Among the recommendations, NCD calls on DOJ to issue guidance to states on their legal obligations under the ADA in the context of ensuring that guardianship be a last resort imposed only after less-restrictive alternatives have been determined to be inappropriate or ineffective; and calls on ED to do more to promote its existing guidance that recognizes the serious implications of guardianship and encourages schools to recognize less restrictive decision making supports for adults in special education.

Read the report at ncd.gov/publications/2019/turning-rights-into-reality.

Guardianship

At Research and Practice for Persons with Severe Disabilities, J. Matt Jameson and colleagues have an article titled "Guardianship and the Potential of Supported Decision Making With Individuals with Disabilities."  The abstract:

Guardianship is a complicated legal concept, which is further complicated by differences from state to state in the framing and implementation of distinctly different forms. Few professionals explain the long-term consequences of obtaining guardianship or provide the range of alternatives available to support an adult with disabilities. This study reports descriptive data from a national survey on guardianship and people with disabilities. The results indicate that regardless of who provides information about guardianship, and regardless of disability classification, full guardianship is consistently discussed most frequently while other options are rarely discussed. We describe implications for practice and provide recommendations. Specifically, supported decision making is described as one potential alternative to legal guardianship that, according to these data, is the least frequently discussed with parents, but which has the potential to avoid many of the legal and social pitfalls that guardianship presents. Limitations and current research needs are described.

Voting Rights in Los Angeles County

Stephen Ceasar reports at The Los Angeles Times on Teresa Thompson, who learned that her autistic son could not vote if he were under a guardianship.

Thompson complained to a local disability rights group in Los Angeles, setting off a chain of events that led this week to federal authorities announcing they are investigating allegations that California has systematically and illegally denied intellectually disabled residents such as Lopate the right to vote.

The group, the Disability and Abuse Project, filed a complaint last year with the U.S. Department of Justice contending that the Los Angeles County Superior Court has wrongly stripped people under limited conservatorships of the right to vote if they could not fill out a voter registration affidavit.

Nora J. Baladerian, the group's executive director, said the issue impacts some of society's most vulnerable citizens, including people with cerebral palsy, autism spectrum disorder and traumatic brain injury, among other intellectual disabilities.

"Naïve me. I thought in the courtroom the law was followed," Baladerian said. "It wasn't so. The rights of individuals with disabilities were not being upheld in court."

It is unclear how many people under conservatorship have their right to vote taken away each year. A spokesman for the county's Registrar of Voters said 123 voters had their registrations canceled since January 2014 for "mental incompetence."

A lawyer with Baladerian's group conducted a review of 61 conservatorship cases involving adults with developmental disabilities in L.A. County and found that nearly 90% of the people had been disqualified from voting, according to the group's complaint.

Financial Planning for Families

At Fox News, Jennifer Cerbasi writes about financial planning.  She quotes AXA financial consultant Bruce Maier on guardianships:

"Parents may not be ready to have that conversation," but, he added, by planning and putting some of the pieces in place, "You can approach the potential guardian and say 'I know this is a difficult thing to assume, but I've made some financial arrangements that may make the situation more comfortable.’"

Though financial planners and insurance agents know their products well, it's the parent of the child with ASD who truly knows the ins and outs of daily life. To that end, Maier suggests that in addition to any legal documents and plans families may put in place, parents write a letter of intent, documenting all the details of caring for their child with special needs, including medications, daily schedules, and favorite toys, movies, or activities.

"For example, if every time Johnny goes to the pediatrician, he gets a red lollipop -- and it has to be red -- that can really make or break a situation," said Maier.

Knowing that many children with autism follow specific schedules or have very unique preferences, a letter of intent, though not a legal document, may ensure vital information is passed on to those now caring for the child.

Douglas O. Baker of Los Angeles, California, is a Special Needs Advisor and, like Crawford, is a father of a child with ASD. Baker said parents should to work with someone they trust, as he has come across his share of professionals who don't necessarily have the child's best interest in mind, or don't listen to the family’s needs.

"Parents have to be wary of agents poaching special needs families, simply trying to sell a product,” said Baker. “Families drop their policy after a year because it didn't make any sense."

Autism and Voting Rights

Previous posts have discussed the voting rights of people with autism. At Autism Speaks, Stuart Spielman writes:

The Bazelon Center for Mental Health Law recently surveyed state laws affecting the voting rights of people with intellectual and developmental disabilities and people receiving mental health treatment. The Center's findings are summarized here. 

Bazelon and the National Disability Rights Network have published a guide that identifies key legal principles for voting rights, including the following:

• A state does not need to require a voter to demonstrate competence, and some states don’t.
• If a state chooses to impose a voter-competence requirement, that requirement cannot be so broad that it takes away the right to vote of people who are capable of voting. It cannot single out a particular group of voters, such as people who are the subject of guardianship proceedings.
• In virtually all states, only a court can find that a person is not competent to vote.
• Questions about a voter’s competence can form the basis for a voter challenge only under very limited circumstances, if at all. Most states’ laws restrict the grounds on which a voter may be challenged, the people who may bring a challenge and the types of evidence that can form the basis for a challenge. Many states do not permit any voter challenges based on competence.
• People with disabilities have the right to get help with voting and to decide who will help them vote. A person with a disability can get help from a friend, family member, caregiver, residential service provider or almost anyone else of his or her choosing except an employer or union member. The person can also ask a poll worker for assistance with voting. 

For questions about voting rights, contact the Bazelon Center at: 202-467-5730.

The Bazelon Center and the National Disability Rights Network created three model motions guardians can use to modify their guardianship order to restore voting rights. They can be found here.

From the Oregon Council on Developmental Disabilities:

ASD in the ER

Previous posts have discussed interaction between first responders such as police officers and firefighters. ER doctors and nurses face challenges, too. At Autism After 16, Michele Langlo writes of taking her adult son to the emergency room:

While the staff on the floor had been informed that Cody was autistic, they really were not sure what an overnight stay would entail for him or them. We explained to them that either Bill or I would need to be there with him round the clock for communication purposes.

At first, they were asking Cody questions in the same way they would ask any neurotypical person. They quickly learned that got them nowhere and they needed help.

But there was the HIPPA law to deal with as well. Something hospitals take this very seriously. Cody is legally an adult, so how was this going to work?

Bill and I both carry photocopies of our Legal Guardianship document from the court with us at all times. Bill pulled his out of his wallet and handed it to the nurse. I don’t think I’ve ever seen anyone quite as relieved as she was at that moment. Now we could begin to make some headway toward my son’s care.
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Now I think about what kind of problems we could have faced had we not been prepared. What would have happened if we had not had that document in our physical possession at that moment when questions of legalities surfaced? Would the doctors and nurses have been legally bound to go strictly on what procedures Cody gave permission for? What if he said no? Would they have given up when they could not get legitimate answers to their questions? I shudder to imagine the horror we could have faced, especially if Cody had not responded to treatment quickly.