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Need to Know

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Bill

Bill Would Shine Light on Neglected Needs of Minorities with
Disabilities

 

 

Andrew Kitchenman | July 14, 2014

 

Jane Dunhamn, mother of a 44-year-old daughter born with significant disabilities, says the state needs to take action to close the gap
in healthcare available to minorities with disabilities.

Communities of color have less access to healthcare, but they also have higher rates of certain disabilities. That combination presents
serious challenges to minorities that are suffering from these disabilities. Yet little attention has been given to the problem, which
advocates say stems from racism, whether conscious or unconscious.


As a result, the Legislature is considering a bill -- S-900 -- that will study the issue and make recommendations to the governor and the
Legislature as to what can be done.


Jane Dunhamn has taken a leading role in supporting the bill. As the mother of a 44-year-old daughter born with significant disabilities,
Dunhamn said she is concerned about the support that her daughter will receive when she can no longer help her.


Dunhamn told a legislative panel that the state must look to systematically address the role of racism and discrimination in solving chronic
inequities. She argued that addressing these inequities would require “reinventing and disrupting policy and practice.”


She also said that mainstream disability-rights organizations and government agencies must actively work on these issues.


“The disability community must learn to actively engage in a meaningful conversation about race, racism and, discrimination -- conscious
and unconscious,” Dunhamn said.


"While very likely uncomfortable for many," she continued, "until the disability community can openly discuss preconceived notions or
stereotypes about individuals who have a different skin color, culture, and speak a different language, those who hold the power of
distributing resources will continue to see these individuals as outsiders to the mainstream culture with whom they are more familiar and
comfortable.”


Dunhamn said there is a wide-ranging need in the state for improving access to services for minorities, adding that “the growing economic
inequality in our country continues to feed the vicious cycle of limited access to quality employment, education, healthcare, transportation,
housing, and other services for those struggling for a better life.”


But Dunhamn noted that there is still a need for more research on the intersection between socioeconomic disparities and their effect on
residents with disabilities.


“When individuals also have a disability, the barriers to necessary services are indisputably exacerbated,” she said.


Bill sponsor Sen. Ronald L. Rice (D-Essex) expressed frustration that this and similar issues affecting minorities haven’t received state
attention in the past. He described the measure as “a compromise bill,” adding that he had originally supported a state task force with
minority members that would advise state officials.


“I just want to make you all aware that we have a voice too,” Rice said.


Dunhamn said there’s a need for more “culturally and linguistically responsive services.”


“Without talking about these differences, there is not opportunity for the people on the inside and outside to find common ground. It is only
with the intimate knowledge of those seen as different that stereotypes can be broken,” Dunhamn said.


She said there’s a need for increased racial and ethnic diversity among many stakeholder groups, including university-affiliated programs,
developmental disability councils, disability rights organizations, disability service systems, state policymakers, parent-driven education
support agencies, and self-advocacy organizations.


Dunhamn added that while some federal offices have demonstrated a commitment to eliminating racial disparities, “other agencies are
relatively silent on this issue, when compared to the enthusiastic investments in self-determination, post-secondary education, self-
advocacy networks, and employment.”


There are groups other than racial minorities who were underrepresented and whose needs deserved attention, Dunhamn said. For example,
she said, the state lacks a shelter for women who have been the victim of domestic violence that also has the capacity to house their

children with disabilities and allow them to receive a full range of services. She said she’s directed officials in New Jersey to such an agency
in New York City to meet the needs of New Jersey residents in the past.


The bill drew broad support, including from the Arc of New Jersey, the New Jersey Council on Developmental Disabilities, the Statewide
Parent Advocacy Network, and the New Jersey Black Issues Convention. 

NOTE - April 2024:  The bill below was passed and signed into law by Govenor Christie in 2014. To date, no requirements of the law have been met. This is "unfinished business."

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‘I’m not safe here’: Schools ignore federal rules

on restraint and seclusion

 

By Fred Clasen-Kelly, NC Newsline - Jan. 2024

Hannah Russell is the mother of a child with special needs who she says was restrained and secluded in school, a practice some researchers say can cause long-lasting trauma. Russell, a former special education teacher, is now part of a network of parents and advocates in North Carolina that helps families navigate the education system. 

Photos show blood splattered across a small bare-walled room in a North Carolina school where a second grader repeatedly punched himself in the face in the fall of 2019, according to the child’s mom. 

His mother, Michelle Staten, said her son, who has autism and other conditions, reacted as many children with disabilities would when he was confined to the seclusion room at Buckhorn Creek Elementary.

“I still feel a lot of guilt about it as a parent,” said Staten, who sent the photos to the federal government in a 2022 complaint letter. “My child was traumatized.”

Documents show that restraint and seclusion were part of the special education plan the Wake County Public School System designed for Staten’s son. Starting when he was in kindergarten in 2017, Staten said, her son was repeatedly restrained or forced to stay alone in a seclusion room.

Federal law requires school districts like Wake County to tell the U.S. Department of Education every time they physically restrain or seclude a student.

But the district, one of the largest in the nation, with nearly 160,000 children and more than 190 schools, reported for nearly a decade, starting in 2011, that it had zero incidents of restraint or seclusion, according to federal data.

Staten said she was alarmed to learn about the district’s reporting practices, and in March 2022 she sent a complaint letter to the Department of Education’s Office for Civil Rights. When the district set up her son’s special education plan, she wrote, “they said things like ‘it’s for his safety and the safety of others.’”

Further, she wrote, in his district files, “nowhere in the record was there documentation of the restraints and seclusion.”

The practice is “used and is used at often very high rates in ways that are quite damaging to students,” said Catherine Lhamon, assistant secretary for the Office for Civil Rights.

The Department of Education says it is meeting with schools that underreport cases of restraint and seclusion, tactics used disproportionately on students with disabilities and children of color like Staten’s son.

Lhamon called the practices “a life-or-death topic” and noted the importance of collecting accurate federal data. Secretary of Education Miguel Cardona announced new guidance to schools in 2022, saying that, “too often, students with disabilities face harsh and exclusionary disciplinary action.”

‘Children with bruises’

For more than a decade, school nurses, pediatricians , lawmakers, and others have warned that restraint and seclusion can cause long-lasting trauma and escalate negative behaviors. In the worst cases, children have reportedly died or suffered serious injury.

“In an ideal world, it should be banned,” said Stacey Gahagan, an attorney and civil rights expert who has successfully represented families in seclusion and restraint cases. The tactics are “being used in ways that are inappropriate. I’m seeing parents with pictures of children with bruises and children afraid to go to school.”

No federal law prohibits restraint and seclusion, leaving a patchwork of practices across states and school districts with little oversight and accountability, according to parents and advocates for people with disabilities.

Hannah Russell, a former special education teacher, holds the hands of her two children at home on Nov. 17. Russell is part of a network of parents and advocates in North Carolina that helps families navigate the education system. She says that even when parents present pictures of their injured children following restraint and seclusion, school systems will say “it didn’t happen.” (Photo: Kate Medley for KFF Health News)

Tens of thousands of restraint and seclusion cases are reported to the federal government in any given year. But those are likely undercounts, say parents and advocates for students, because the system relies on school staff and administrators to self-report. It’s a failing even the Department of Education acknowledges.

“Sometimes school communities are making a deliberate choice not to record,” Lhamon said.

The Wake County Public School System declined to answer questions about Staten’s case for this article, citing student privacy law.

A 2022 report to Congress found North Carolina schools handed lengthy suspensions or expulsions to students with disabilities at the highest rate in the nation .

The district in 2022 submitted revised restraint and seclusion data to the federal government dating to the 2015-16 school year, said Matt Dees, a spokesperson for the Wake County Public School System, where Staten’s son attended school. In a written statement, he said federal reporting rules had been confusing. “There are different guidelines for state and federal reporting, which has contributed to issues with the reporting data,” Dees said.

But parents and advocates for children with disabilities don’t buy that reasoning. “That explanation would be plausible if they reported any” cases, Gahagan said. “But they reported zero for years in the largest school district in our state.”

Hannah Russell, who is part of a network of parents and advocates in North Carolina that helps families navigate the system, said even when parents present pictures of their injured children, the school systems will say “it didn’t happen.”

In North Carolina, 91% of districts reported zero incidents of restraint and seclusion during the 2015-16 academic year, the second-highest percentage in the nation after Hawaii, a federal report found .

“This was a problem before COVID,” said Russell, a former special education teacher who said one of her own children with special needs was restrained and secluded in school. “It is an astronomical problem now.”

North Carolina’s Department of Public Instruction, which oversees public schools statewide, did not make officials available for interviews and did not answer written questions.

In an email, spokesperson Jeanie McDowell said only that schools receive training on restraint and seclusion reporting requirements.

Educators are generally allowed to use restraint and seclusion to protect students and others from imminent threats to safety. But critics point to cases in which children have died or suffered post-traumatic stress disorder and other injuries for minor transgressions such as failing to stay seated or being “uncooperative.”

Zero incidents reported

In 2019, the Government Accountability Office, which conducts research for Congress, said some school systems almost never tell the federal government about the use of restraint and seclusion. About 70% of U.S. school districts report zero incidents.

The Department of Education’s “quality control processes for data it collects from public school districts on incidents of restraint and seclusion are largely ineffective or do not exist,” a 2020 GAO report said.

Lhamon said her office is conducting investigations across the country and asking districts to correct inaccurate data. The Department of Education wants school districts to voluntarily comply with federal civil rights law protecting students with disabilities. If they don’t, officials can terminate federal financial assistance to districts or refer cases to the Department of Justice. 

Portions of photos sent to Michelle Staten from an official at her son’s former elementary school in North Carolina. The images show blood splattered across a small, bare-walled seclusion room where, Staten said, her son repeatedly punched himself in the face in 2019. Critics say restraint and seclusion are tactics used disproportionately on students with disabilities and children of color, like Staten’s son. (Photos: Michelle Staten)

The Wake County Public School System settled a lawsuit last year after the district did not report any use of restraint or seclusion in the 2017-18 school year, even though a student was secluded or restrained and witnessed the practices used with other children, according to Gahagan, who represented the student’s family.

As part of the settlement, the district agreed to notify parents by the end of each school day if their child had been restrained or secluded that day.

 

Click here to read NC Newsline’s report from August of 2023 on the Wake County settlement .

Click here for a summary prepared by Disability Rights NC of the law and the rights of children and parents with respect to seclusion and restraint in schools.

 

Gahagan said transparency would increase in Wake County but that problems persist across the country. Schools sometimes keep seclusion incidents hidden from parents by calling them “timeouts” or other euphemisms, Gahagan said.

“For most parents a ‘timeout’ doesn’t mean being put in a closet,” Gahagan said. “What is the recourse for a parent? There are not a lot of checks and balances. There is not enough accountability.”

Still, Gahagan, a former teacher, expressed sympathy for educators. Schools lack money for counselors and training that would help teachers, principals, and other staff learn de-escalation techniques, which could reduce reliance on physical interventions, she said.

Jessica Ryan said that in New York City, her son, who has autism, received counseling, occupational therapy, and a classroom with a standard education teacher and a special education teacher.

But when Ryan’s family moved last year to Wake County, home to more than 1 million people and part of the famed Research Triangle region, she was told he didn’t qualify for any of those services in the district, she said. Soon, her son started getting in trouble at school. He skipped classes or was written up for disruptive behavior.

Then in March, she said, her husband got a phone call from their son, who whispered, “Come get me. I’m not safe here.”

After the 9-year-old allegedly kicked a foam soccer ball and hit a school employee, he was physically restrained by two male school staffers, according to Ryan. The incident left the boy with a bloody nose and bruises on his leg, spine, and thigh, the medical records say.

The Wake County school district did not respond to questions about the events described in the documents.

After the incident, Ryan said, her son refused to go to school. He missed the remainder of fourth grade.

“It is disgusting,” said Ryan, 39, who said she was a special education teacher in Wake County schools until she resigned in June. “Our kids are being abused.”

The district did not record the incident in PowerSchool, a software system that alerts parents to grades, test scores, attendance, and discipline, Ryan said.

In August, Ryan’s son began classes at another Wake County school. By late October, school and medical records say, he was restrained or secluded twice in less than two months.

Guy Stephens, founder and executive director of the Alliance Against Seclusion and Restraint, a nonprofit advocacy group based in Maryland, said he founded the group more than four years ago after he learned his own son was afraid to go to school because he had been repeatedly restrained and secluded.

Stephens said some children subjected to the practice may start to act out violently at home, harm themselves, or fall into severe depression — impacts so adverse, he said, that they are a common part of the “school-to-prison pipeline.”

“When you go hands-on, you are putting more people in danger,” Stephens said. “These lives are being set on a path to ruin.”

In May, federal lawmakers proposed the Keeping All Students Safe Act , a bill that would make it illegal for schools receiving federal taxpayer money to seclude children or use restraint techniques that restrict breathing. Sen. Chris Murphy, a Connecticut Democrat, and other supporters have said a federal law is needed, in part, because some districts have intentionally misreported numbers of restraints and seclusions.

Advocates acknowledge Congress is unlikely to pass the bill anytime soon.

School administrators, including AASA, a national association of school superintendents, have historically opposed similar legislation, saying that restraint and seclusion are sometimes needed to protect students and staff in dangerous situations.

AASA spokesperson James Minichello declined comment for this article.

Staten said she begged officials at Buckhorn Creek Elementary and the district to remove restraint and seclusion from her child’s special education plan, documents show. Officials denied the request. 

                 

“I feel like they were gaslighting me into accepting restraint and seclusion,” Staten said. “It was manipulative.”

Staten and her husband now home-school their son. She said he no longer has emotional outbursts like he did when he was in public school, because he feels safe.

“It’s like a whole new kid,” Staten said. “It sometimes feels like that was all a bad dream.”

This report was first published by KFF Health News , a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF .

I'm not safe here
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Work Until I Die
“Work Until You Die” Is Not a Retirement Plan  

Rebecca Cokley -  The Nation - March 2023


The disability community is reeling this week over the passing of Judith Heumann. Judy, a polio survivor, spent most of her 75 years advocating for the rights of people with disabilities, in school, in employment, in foreign policy, in the United States and globally. She served in both the Clinton and Obama administrations, and pioneered roles at the World Bank and the Ford Foundation. But the reality is that Judy, like so many disabled people, had to work until her death to maintain the quality of life that she needed to stay in the community and avoid being forced against her will into an institution or nursing home.


As Rebecca Vallas at the Disability and Economic Justice Collaborative says, “Disability is a cause and consequence of poverty.” Rules and regulations regarding Social Security, the Fair Labor Standards Act, the Workforce Investment Act, and Medicaid govern every decision people with disabilities can make about their economic status, from what college to attend to whether to marry. 

Research from the National Disability Institute shows that households with a person with a disability that limits their ability to work have approximately $17,000 in additional annual expenses than a comparable household without a person with a disability. People with disabilities experience poverty at twice the rate of nondisabled people. The disability community experiences higher levels of homelessness, food insecurity, and unemployment than people without disabilities. And before the global pandemic, more than 10,0000 people with disabilities died in one year while waiting for benefits approval. Not surprisingly, these statistics become even more stark when incorporating race, gender, and 2LGBTQIAP identities.

The problem with all of this is that there is no “problem.” Rather, the system is working exactly as it was designed to work. And because of the gargantuan gaps in our social insurance landscape, “work until you die” has become the retirement plan for so many disabled people.

Home and Community Based Services

Most people think of seniors when thinking about home care services, not people with disabilities. But this segment of the population includes anyone who is not part of the labor market, as well as some who are. The services provided by HCBS may include dressing and bathing, food preparation, cleaning and laundry, everyday tasks that disabled people need assistance with to be able to live in their community. Those who do not receive HCBS mostly live in nursing homes or institutions. As of 2016, there were over 656,195 people waiting on waivers to allow them to move into the community. But even if they get a waiver, our society is not prepared with the needed infrastructure to support these individuals in living in the community. There is not enough accessible housing or transportation to meet the needs of disabled people in the community, nor a workforce that’s trained or paid enough to supply services to meet the needs. Multiple attempts at increasing the budget for HCBS have failed in various pieces of pandemic response legislation. So people with disabilities are forced to crowdfund. One-third of Go Fund Me campaigns are designed to fund a health-related expense. In the summer of 2022, the disability community worked to crowdfund for a trust set up to support writer-activist-oracle-cyborg Alice Wong, who upon returning home from an extended hospitalization faced involuntary institutionalization without financial support.

Asset Limits

During times of increased inflation, we are told that it is important to slow down consumer spending. However, what does that mean when you are prohibited by law from saving money? Over 8 million people in the country are prohibited from saving because they are recipients of Supplemental Security Income. Currently, an individual on SSI cannot have more than $2,000 in assets, and a couple no more than $3,000, with some exceptions. These limits have been in place since 1984, when gas was $0.83 a gallon and a gallon of milk was $1.89. But there is hope for change. The bipartisan Savings Penalty Elimination Act, proposed in the last Congress by Senators Sherrod Brown (D-Ohio) and Rob Portman (R-Ohio), would have raised individual asset limits for Supplemental Security Income from $2,000 to $10,000 and for a family from $3,000 to $20,000.

Medicaid

Despite rumors that cuts to Social Security and Medicare are off the table, the same cannot be said for Medicaid. Proposed cuts to Medicaid would be disastrous to people with disabilities and their families. States that participate in Medicaid expansion see increases in the employment rates of people with disabilities because enrollees are not required to commit to an inability to work to access health insurance. However, the move to work requirements has the opposite effect. Work requirements force people to maintain a full-time job or risk losing health insurance. Some disability groups are typically exempt, but cancer survivors, people with serious mental illnesses or among the chronic illness community are usually not carved out of the requirements. Given the impact of long Covid and the challenges of getting diagnosed (and pressure of insurance companies to not diagnose people with it), it is likely these individuals will find themselves subjected to work requirements as well. No accounting of the local economy, the season, a person’s background, or education is considered. People with disabilities who are more likely to work part-time would find themselves without health care. Work requirements also target family members of people with disabilities who may perform caregiving duties. So, again, disabled people are being forced to work until they die to maintain their health care.

Recently, Alice Wong shared with me how Medicaid estate recovery rules could mean that the government could take whatever a person with a disability has in savings upon their death to “recover” the costs of services provided. This eliminates any access to generational wealth or retirement for Medicaid recipients.

Even as a college-educated, Senate-confirmed, philanthropist diplomat, Judy Heumann, like hundreds of thousands of other people with disabilities, lived in fear of not being able to afford the supports and services she needed to live in the community. Until policies are revised in such a way that centers those in need of supports, we will continue to see disabled people forced to choose between working themselves to death or giving up their lives to an institution. 

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