In honor of the committed teachers who educate children with intellectual and developmental disabilities, here are links to content for Teacher Appreciation Week. I couldn’t pass up the opportunity to share these ready-made (for me) shout-outs.
This video of Virginia Serpico, who works at Bornhava, an early childhood center for children with developmental disabilities in Western New York, is pure joy, from her singing to her sharing her love for her class, which she calls “the jam.”
In this lovely video interview, Fernquist, who is a BOCES Special Ed teacher in upstate New York, makes sure to praise his students as well as the paraprofessionals and therapists with him he works.
Antonella Sciscioli is an elementary school teacher in Long Island who started her school career in 2010 as a student lunch aide.
Office of Special Education and Rehabilitative Services honors scholars who completed their degree programs with support from an OSEP grant, and gives them the opportunity share why they teach. There are quite a few of them, and their stories are inspiring.
Renee Malm is a high school special ed teacher in Nebraska who took a nontraditional path to become an educator, and who started out working in a youth shelter.
Mary Truman is a special ed teacher who was named the 2023 Teacher of the Year for Prince George’s County and is now up for Maryland’s Teacher of the Year. Good luck to you, Mary.
The Putnam County Legislature earlier this month voted unanimously to create a full-time position in its Department of Social Services and Mental Health (DSS/MH) called the Coordinator for the Office of Individuals with Disabilities.
The Coordinator will be responsible for helping connect individuals with I/DD and their families with services available to them, as well as be a community liaison to the various organizations that exist to help and advocate for families and individuals with I/DD.
It’s part of Putnam County’s pledge to ThinkDIFFERENTLY. The initiative, which reportedly started in Duchess County in 2015, is a call to action to change the way individuals, governments, businesses, and communities think about and interact with those of different abilities.
Photo: Putnam County Courthouse via Wikimedia Commons
As Congress prepares to reauthorize the Federal Aviation Administration’s funding and programs, and disabled passengers call for more airline accountability and accessibility to be included in the reauthorization act, a bipartisan bill was recently introduced called the Mobility Aids on Board Improve Lives and Empower All, the Washington Post reports.
The MOBILE Act would require DOT to take actions that empower passengers who use mobility aids and improve those passengers’ experiences when flying. Its sponsors include John Thune (R-SD) and Tammy Duckworth (D-IL), who has used a wheelchair since she lost her legs fighting in the Iraq war.
RELATED NEWS: USA Today looks into mobility device incidents and calls for stories
More specifically, the bill, which has a lot of vague words such as “to develop” and “assess” in it, requires the Secretary of Transportation to:
RELATED NEWS FROM THE UK: Rights on Flights: the new campaign seeking to make air travel more accessible
Senator Duckworth’s office included data when it introduced the bill including that more than 25 million Americans, over 14% of whom use wheelchairs, report they have disabilities that limit their travel. Also, in 2021, the DOT received 1,394 disability-related complaints, an increase of more than 157% from the total of 541 complaints received in 2020, and up 54% from the 905 disability complaints received in 2019.
If you thought finding childcare was more challenging now than during the worst of the pandemic, you wouldn’t be wrong.
The Hechinger Report writes not only has it gotten harder nationwide, but families of kids with disabilities who do find slots “often find their children expelled or ‘counseled out’ of school if they are deemed too disruptive.”
RELATED NEWS: Check out New York’s Division of Childcare Services to learn how to ease the burden
Learn more about the issue at the Hechiner Report, including the economic hardship a lack of childcare can create for working parents.
This response to the murder of Jordan Neely by the Autistic Self-Advocacy Network (ASAN) hits many crucial points: The stereotyping of people who are unhoused, disabled, and experiencing mental health crises; violence against people of color; and the urgent need to bolster social service programs.
From ASAN:
“Jordan Neely, a 30-year old unhoused Black man, was killed by another New York subway passenger last week. His family has reported that Neely was autistic and also experienced mental health disabilities. Neely was showing apparent distress when another passenger put him in a chokehold for 15 minutes, killing him.
We mourn the loss of Jordan Neely and send condolences to his family and loved ones. We are deeply concerned about the public response to this killing. We are disturbed to see the reiteration of stereotypes that people who are unhoused or disabled are violent or threatening in the wake of this killing. Violent responses to people experiencing mental health crises, “difficult behavior,” or other manifestations of disability are unacceptable. The victims of this violence are all too often Black or brown.
This incident is only the latest in a long history of violence against people of color, especially disabled people of color in the United States. Too often, murders of people of color are justified by the aggressor’s perception of a threat, so-called stand-your-ground laws, or by accusations that the victim committed a crime. None of these are moral justification for murder.
Disabled people without homes need housing and services, not the threat and use of physical violence. Jordan Neely was failed repeatedly by society. New York City and the state of New York are currently making cuts to social services programs such as the Homeless Services and Youth and Community Development departments. Similar cuts in funding to housing and other services for low-income or disabled Americans can be seen across the country, including Medicaid unwinding and proposed cuts to Medicaid. Simultaneously, the New York mayor, Eric Adams, ensures that the New York Police Department is well-funded to the detriment of important social programs, and argues for the involuntary commitment of people with mental health disabilities.
After deaths like Jordan’s, our community sees an increase in justifications for involuntary commitment, where people with disabilities are put in a psychiatric hospital against their will, or people discussing the need for increased beds in psychiatric hospitals. Institutions are not a solution to a society-wide failure to provide housing and services. These so-called “solutions” also put the blame on the victim for being killed. People with disabilities, including autistic people and people with mental health disabilities, are entitled to public spaces, just as people without disabilities are. We have fought and will continue to fight for the right to live in the community. We need community-based services, access to housing for unhoused people, and community-based mental health responses. We also need to send a clear message that even without these services, there is no excuse to kill someone for experiencing a mental health crisis, “difficult behavior,” autistic meltdown, or any other manifestations of disability.
Jordan Neely’s killer must be held accountable, but his arrest will not be enough to prevent further violence against disabled people of color. We call on the general public not to presume that people showing signs of distress or behaving unusually are a threat. Everyone is entitled to use public space, including people who are visibly upset. When someone is behaving erratically in public without harming anyone, bystanders should offer assistance or leave the distressed person alone. Observers’ discomfort does not justify a violent response.
Disability does not make us disposable, no matter what form our disabilities take. Jordan Neely was repeatedly failed by the systems around him and blamed for the ways lack of support worsened his mental health. Until we address the ways budget cuts and deprioritizing of social service programs disproportionately affect disabled people of color, individual people will pay the price of systemic failure. However, Neely was killed by a single person’s decision to use violence in a situation that did not warrant violence. The public response to this killing highlights the ways anti-Blackness and ableism create circumstances where people feel justified in fatal violence.
ASAN will continue to push for a world in which disabled people, especially disabled people of color, are not disposable the moment we cause discomfort. We will continue to stand up for the lives and safety of both disabled people and people of color. ASAN will work to create a world where people with disabilities have homes and the services we need, and also a world where disabled people can exist in public without being labeled as disruptive or a threat.
Rest in Power, Jordan Neely.”
As reported last week in The Boost, the New York State 2023-24 budget utterly fails nonprofit Direct Support Professionals (DSPs). In response, Assembly Member Rebecca Seawright and state Senator John Mannion have introduced a bill to raise wages an extra $4,000 per year in income, which reportedly comes out to approximately $2.20 per hour.
The direct support wage enhancement bill is likely to go before the full floor for a vote in both the assembly and senate by the end of June, reports amNY. And to help its passage, the news site adds, the legislators plan to hold a rally in support of the bill in Albany on May 15, which is Disability Awareness Day.
I’m sure there will be petitions to sign in support of the bill, so keep an eye out. If you know of one, let me know and I’ll post it.
A look at how hard it is to receive a Free Appropriate Public Education, Massachusetts’ Day Program problem, a new Federal Special Ed Chief, and more news for the week ending May 13, 2023.
You’ll notice that, as always, this roundup includes links to Disability Scoop. In other words, if you don’t read it, you should!
The Parents Who Fight the City for a “Free Appropriate Public Education” The New Yorker goes all in with a feature story about the “protected, even contentious negotiations between parents and school staff” to get children with disabilities a free and appropriate education. (New Yorker)
Senate Confirms New Special Education Chief The U.S. Senate confirmed Glenna Wright-Gallo as assistant secretary for special education and rehabilitative services at the Department of Education. (Disability Scoop)
End Of Public Health Emergency Brings ‘Uncertainty’ For Disability Services Many of the pandemic-era policies that benefited people with disabilities are set to expire and the implications could be significant. (Disability Scoop)
The schools that take Colorado’s ‘most vulnerable’ children are disappearing In 2004, Colorado had 80 specialized programs known as facility schools. Now there are 30. (Chalkbeat)
‘The fight is always tiring’: North Carolina tussles over how to serve disabled people The state’s federally designated nonprofit mandated to advocate for people with disabilities is suing the state to fund a long-standing backlog for waivers to hire in-home help. The result could be less money for other much-needed services, like support for existing group homes.
Nebraska governor pledges funds to boost staffing of developmental disability caregivers Much like in New York, advocates for individuals with developmental disabilities say languishing reimbursement rates for care providers who work in community-based settings have created a “crisis of care.” Find out what’s being pledged. (yorknewstimes.com)
Thousands of adults with intellectual and developmental disabilities have lost access to day programs in Massachusetts. Advocates say up to 3,000 residents are waiting for a placement in these much-needed day programs, which are facing the same staffing shortages seen in other social service fields. (WGBH.org)
On Wednesday, May 4, New York State Governor Kathy Hochul signed a budget that utterly fails nonprofit direct support professionals (DSPs), the committed caregivers who support and assist people with developmental and intellectual disabilities (I/DD) 24/7. Forget them getting the salary hike they deserve — they didn’t even get what they need to live.
The $229 billion 2023-2024 budget, one month late (the process isn’t called “The Big Ugly” for nothing) landed on a mere 4% cost of living increase, blatantly and callously ignoring an escalating crisis in the disability community that has seen DSPs jumping ship, group homes closing, and support services and agencies understaffed and overworked.
New York Alliance for Developmental Disabilities had been asking for 12.5% COLA for non-profit service providers (with 8.5% being negotiated in the budget dealings) and a DSP wage enhancement of $8,000 to boost their pay, the latter of which didn’t make it into the budget at all.
The organization called the final budget “a major disappointment for nonprofit provider agencies and the dedicated workforce that supports individuals with I/DD. … Without the needed COLA investment, our crisis will only become more dire.”
In response to the budget, Assembly Member Rebecca A. Seawright has introduced a bill that would provide a DSP wage enhancement. The bill, according to AmNY.com, would allocate $4,000 per employee to each agency which would then be passed on to the DSPs. The $4,000 would be for just one year, while the industry works on next year’s budget and other legislation, it reports.
“We are truly stunned by the inadequate investment in our service system, The Arc New York wrote in a statement. “Nonprofit providers of supports and services for New Yorkers with intellectual and developmental disabilities will receive a mere 4% cost of living increase. [This] covers less than half the increase in inflation over the past year. It does nothing to reverse our escalating workforce crisis. Most importantly, it does not address the erosion of care and supports for New Yorkers with I/DD.
“Paired with the reality of inflation, a 4% COLA has become essentially a 4.5% cut.
“We called for an 8.5% COLA and a Direct Support Wage Enhancement to meet those needs. The legislature included an 8.5% COLA and no DSWE in their budgets. We advocated fiercely for that compromise to be realized, but the end result is entirely inadequate.”
A study has recently been published that makes the case for paid family caregiving. In other words, as so often happens, a study has come out that backs up what we already know: Family caregivers do critical work that keeps many parents out of the workforce and for which they need to be compensated. Furthermore, during a workforce crisis, such as the one we’re in now, paying family caregivers could help balance out that shortage.
RELATED NEWS: Biden Signs Executive Order to Improve Care for People with Disabilities and Support Caregivers
The study, while not directly tied to children with intellectual and developmental disabilities (I/DD), found that paid family caregivers provided certified nursing assistant-level care (CNA) with a greater employee retention compared with non-family CNA caregivers. The children all received CNA care through Colorado’s Medicaid paid family caregiving program between 2017-2019 by a home healthcare agency.
The study explains that in Colorado (and, as we know, in New York), a shortage of home healthcare workers is reducing the care available. “This mismatch of supply and demand can cause families … to face financial hardship when their parents leave or reduce work to address their children’s intensive medical needs at home.”
To read more, check out the study, “Paying Family Medical Caregivers for Children’s Home Healthcare in Colorado: A Working Medicaid Model,” in The Journal of Pediatrics
Unfortunately, very few programs pay family members or friends on a regular basis to provide care for children with I/DD. (A look at New York’s program is below.) There does seem to be some movement, however, on a state-by-state basis. Family caregivers in Maine became eligible in October to receive grants of up to $2,000, the latest state program aimed at supporting the chronically overworked population, according to a report in Barron’s.
Some states offer paid family and medical leave, albeit a short-term solution, while New Mexico has applied to the Centers for Medicare and Medicaid Services for a waiver that would allow the state to use some federal funds to compensate family caregivers and legal guardians serving as caregivers, Barron’s reports.
We all know that taking care of children with I/DD results in sometimes unbearable levels of stress. You have to learn about the disability, research and locate resources, advocate for your child every step of the way, often fighting for services with the very institutions designed to help, pay for special interventions and activities, and so much more. Then, on top of all that, are the emotional and physical demands of day-to-day caregiving.
A 2019 study out of the University of Connecticut notes that compared to non-caregivers, family caregivers are at increased risk for adverse physical and psychological health outcomes related to chronic stress.
And what do most of the well-meaning articles and experts tell you to do? Manage that stress! Find a parenting group, take a deep breath, make some me-time. Nowhere on those lists is how to get the needed compensation to afford the services needed and to pay the bills.
New York does have a paid caregiving program, called CDPAP, or the Consumer Directed Personal Assistance Program. The Medicaid program allows beneficiaries to hire their family members and friends for caregiving services. There are requirements and restrictions, some big ones, of course, so start out by going to this New York State link to find out more.
Here are some key points:
A proposed federal rule to improve access to care, quality and health outcomes in the Medicaid program, New York City schools continue to dial 911 and haul away kids with developmental disabilities, a special report on Special Education, and more for the week ending May 6, 2023.
Feds Want to Shake Up Rules for Home and Community-Based Services An important look at the Ensuring Access to Medicaid Services regulation (the Access Rule), aimed at improving access to home and community-based services for people with disabilities and bolstering the direct support professional workforce. (Disability Scoop)
Bill Would Create Program to Help Caregivers of Children with Autism Federal legislation has been introduced to provide caregiver skills training to families with children with autism as well as children with other physical, intellectual and developmental disabilities. (Disability Scoop)
NYC Schools Handcuff and Haul Away Kids in Emotional Crisis A wrenching account of a Brooklyn 7-year-old with developmental disabilities whose tantrum in school led to handcuffs and a 911 call introduces this investigation by THE CITY and ProPublica. The report found that city schools continue to call on safety agents and other police officers to manage students in distress thousands of times each year. (ny.chalkbeat.org)
Special Education Trendline This series from K12dive.com will post special education trends and developments throughout the year. Posts online right now include a look at curriculum-based measures (CBMs) to identify risk and monitor the progress of all students, and reducing special education teachers’ caseloads in Los Angeles. (K12dive.com)
Passing the Paddle: Some Missouri School Districts Cling to Corporal Punishment (the74million.org)
Equine therapy program in Texas struggles to grow as developers buy up land (pbs.org)
‘Rain in My Head’ Triple Winner at Easterseals Disability Challenge (Variety.com)
Hispanics with disabilities hit record employment, data shows (axios.com)
National Center on Disability and Journalism names new executive director (cronkite.asu.edu)