My daughter, Lauren, turned 40 last month. She is happy and healthy. And that is nothing short of a miracle.

From the moment my wife, Susan, found Lauren blue and limp in her crib at the age of 7 months — the consequence, we later would learn, of epileptic seizures she suffered in the night — Lauren’s life has been a struggle.

These brutal seizures would continue, poorly controlled, for the next 19 years, roiling her developing brain and necessitating an ever-shifting regimen of medications with punishing side-effects, of surgeries and hospitalizations. More than once, we feared we would lose her.

Lauren’s doctors finally found a cocktail of medications that would work to subdue the seizures, but the battering her brain took from the ordeal left her with significant developmental deficits.

We moved our family from one town to another in search of special education programs that would include her, with adaptations, in regular classrooms. But as the years went by and her classmates matured emotionally and intellectually, the gap between Lauren and her peers became a chasm. The girls and boys around her were growing into young women and men, with all that entails, while Lauren was still in many ways a child, poignantly struggling to find her place.

Lauren’s seizures had been terrifying and painful. But her loneliness was absolutely heartbreaking. She longed for friendships and, whenever she got the chance, gravitated to others with similar challenges and shared experiences. Lauren didn’t need words, which were often hard for her to find, to communicate loud and clear to us what mattered most to her.

When high school ended, we faced a cliff familiar to many parents of children like Lauren. In Illinois, as in most states, jobs and services for adults with disabilities are woefully inadequate. We struggled to find programs and opportunities for the relationships that Lauren craved.

We agonized over whether this would be her future, sitting at home, waiting for activities, without an independent life of her own. We anguished over what would happen when we were gone.

But 19 years ago, that all changed.

Lauren moved to Misericordia, a remarkable community for people with intellectual disabilities near us on Chicago’s North Side. For the first time, her days were rife with activities and her life was filled with friends.

No, it’s not the life we envisioned for Lauren the day she was born, a seemingly healthy, bright-eyed little girl. But looking back at the obstacles she’s faced, she’s thriving in ways that once seemed impossible.

David Axelrod's letter continues here.

VOR's new President, Harris Capps, wrote to the Times in support of Mr. Axelrod's letter. VOR's letter may be found here.

By Erin Blakemore, Washington Post, July 3, 2021

Parents of kids with medical complexity face challenges other parents don’t.

But how is their mental health compared to their counterparts whose children don’t face problems such as chronic diseases, developmental disabilities or congenital disorders? A new national study in Pediatrics suggests that parents of children with medical complexity are up to five times likelier to have poor or fair mental health — and that many don’t know how to get support.

About 1 percent of children are categorized as medically complex — a categorization that goes beyond special needs. From managing assistive devices to going to doctors’ appointments, their parents combine intensive medical caretaking with parenting.

That takes a toll, the study suggests. It compared self-reported data from 65,000 parents who participated in the 2016-2017 National Survey of Children’s Health.

Researchers found that parents of medically complex children were more than five times likelier to report poor or fair mental health than parents who didn’t have children with many medical needs. Although they were likelier to say they got emotional support from health-care providers, advocacy groups or their own counselor or therapist, they were more than twice as likely to say they didn’t know where to find mental health support in their communities.

“Without enough support, these families often struggle,” the study’s lead author, Nathaniel Bayer, an assistant professor and pediatric hospitalist at University of Rochester-Golisano Children’s Hospital, said in a news release.

Note: The much reported court battle between pop-star Britney Spears and her father regarding her attempts to terminate his guardianship over her life and finances has led to a spate of elected officials and self-righteous advocates brandishing their opinions or calling for investigations into guardianship laws and guardianship rights. From Elizabeth Warren and Bob Casey on the far left to Matt Gaetz on the extreme right, Members of Congress are calling for an examination of guardianship (Read the Warren & Casey article here, Gaetz article here). Jonathan Martinis has been using the case as a means of getting his name back in the papers, citing his "Justice for Jenny" case and his ongoing promotion of Supported Decision Making as a replacement for guardianship for people with I/DD (Read the Martinis article here).

By Lauren C. Enea, Westchester & Fairfield County Business Journals, June 30, 2021

As if the parents of children with disabilities didn’t have enough stress and worries to confront on a daily basis, the COVID 19 pandemic has pushed to the forefront the possibility of their own mortality and the issue of whom will undertake the role of being the legal guardian and primary caretaker of their disabled child (minor and/or adult).

Obviously, if the child is a minor and has two parents, the surviving parent would continue to be the legal guardian during the child’s minority (in New York, until age eighteen (18)). Once the disabled child has attained the age of 18, depending on their incapacities, diagnosis and needs the parent should strongly consider being appointed the legal guardian for the child. If the child’s disability warrants the appointment of a guardian, it will allow the parent the ability to continue to make financial and personal decisions for the child who is unable to do so for his or herself.

In New York, there are two (2) types of Guardianship proceedings that can be utilized to obtain Guardianship over a disabled child. A proceeding under Article 17-A of the Surrogate’s Court Procedure Act (“17-A”) is commonly utilized for soon-to-be adult children that have “developmental and/or intellectual disabilities” that manifest before the age of twenty-two (22), such as autism, autism spectrum, traumatic brain injuries, epilepsy, dyslexia and other neurological and intellectual disabilities. Physical and functional disabilities when paired with the above are also of relevance.

By Naomi Martin, Boston Globe, July 7, 2021

A federal appeals court in Washington, D.C., this week overturned the US Food and Drug Administration’s ban on shock devices created and used by a Canton residential school for children and adults who are intellectually disabled.

The 2-1 decision issued Tuesday allows the Judge Rotenberg Educational Center to continue using the controversial devices on residents. The center is now the sole facility in the country that uses electric shocks to modify behavior in patients with disabilities, according to court records.

The center’s attorney, Michael Flammia, said Rotenberg leaders are pleased with the ruling, which allows workers at the facility to continue delivering electric shocks to a portion of adult residents to correct aggressive or self-injurious behavior when other alternatives fail. The Rotenberg center continued administering shocks to about 55 of its 300 residents throughout the pandemic, under a stay of the FDA’s 2020 ban, he said.

But disability advocates say the shocks are barbaric forms of torture that should be outlawed, citing court records and former residents’ accounts in news articles and court testimony reporting being shocked many times by accident or for minor, nonviolent infractions such as swearing, running away, or not following directions, allegations the center denies. The United Nations also has called the center’s shock practices “torture.”

The Rotenberg center says shocks only are administered with approval from the patient’s family and a local judge. The center says the treatment is necessary to prevent people from behaviors such as punching themselves or banging their heads against a wall, risking brain injury, broken bones, or blindness. Some patients who were logged injuring themselves 400 times a month have responded to the treatment so well that they experience just a few instances a month afterwards, Flammia said.

“With the treatment, these residents can continue to participate in enriching experiences, enjoy visits with their families and, most importantly, live in safety and freedom from self-injurious and aggressive behaviors,” the center said in a statement.

But Shain Neumeier, a Springfield attorney who has represented former center residents, said the shocks are used as painful punishment on people who have no say in the matter, and their families often are not fully informed about the severity, frequency, or duration of the shocks people receive and their lack of effectiveness.

“State legislators need to end funding, if the court system is unwilling to put an end to this barbaric practice,” Neumeier said.

The Judge Rotenberg Educational Center Parents Association issued a statement praising the court’s decision:

“We have and will continue to fight to keep our loved ones safe and alive and to retain access to this life saving treatment of last resort,” the association said.

National Law Review, July 16, 2021

On June 16, 2021, Hawaii enacted Senate Bill 793 (the “Act”), which repeals an exemption to the minimum wage for disabled employees, often referred to as “the disability subminimum wage.” The Act took effect immediately and requires all Hawaii employers pay disabled individuals no less than the state minimum wage.

Previously, Section 14(c) of federal Fair Labor Standards Act permitted Hawaii employers to pay individuals with disabilities less than the state minimum wage, which is currently set at $10.10. However, the Act explains that the exemption, which was intended to “train and prepare individuals with disabilities to gain open-market competitive jobs,” has shown over time to “simply [provide] a subsidy for sheltered workshops that do not support movement of [workers] to competitive employment.” In repealing the exemption, the Act states that the exemption no longer fulfills its original purpose and instead has led to discrimination against individuals with disabilities.

VOR OPPOSES:

H.R.4131 & S.2210 - The Better Care Better Jobs Act - While this bill would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of such special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

VOR takes no position on whether or not the minimum wage should be raised to $15 per hour, or some other amount. We do, however, oppose any bills (see H.R. 603 & S. 53, above) that would remove vocational centers and 14(c) wage certificates.

For those who do support raising the minimum wage, there are currently two "clean" bills in the House that would raise the minimum wage without taking opportunities to work in a therapeutic environment through the use of 14(c) certificates. Those bills are H.R. 112, from Rep. Al Green (D-TX) and H.R. 325, from Rep. Steve Cohen (D-TN)

Additionally, Senator Tom Cotton (R-AR) has introduced a bill in the Senate, S 478, that would raise the minimum wage to $10 over a period of three years for some workers, without eliminating 14(c) wage certificates. The bill would also require the Department of Homeland Security to implement electronic verification to verify that prospective employees are legally authorized to work in the U.S.

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