Medicaid rolls continue to shrink, Rutgers has a new disability study minor, a family opens a flower farm to give their autistic son a job and more news to know for the week ending Sept. 2, 2023.
Spotlight
Family-run Little Otter Flower Farm in central Virginia gets a lovely profile. It’s of interest both because its owners opened it to give their son, who’s autistic, employment in work he enjoys, undeniably awesome, and because it points out the unfortunate fact that parents are forced to be this creative: Nearly 99% of working-age autistic adults who potentially need employment services actually receive them.
A reminder of why it’s so hard to get elected officials to pay attention to issues we care about: Lobbying in 2022 topped $300 million in N.Y., a record.
I promised more on the Monument Special Rodeo held Aug. 26 in Rapid City, S.D., for people with disabilities. Check out the video!
Special Ed Primer 2023: Everything You Need to Know, from Early Intervention to Postsecondary Transition Planning
Welcome to the jungle. Special Education is a complicated ecosystem and whether you’re in the thicket or about to step into it, you undoubtedly have questions. To help, The Boost has put together a Special Education primer of guides and resources to help you navigate the rules and regulations that aim to give students with disabilities a Free Appropriate Public Education (FAPE).
Of course, a primer lays things out quite neatly, and special ed is anything but clear-cut. The number of students in special ed in the U.S. has nearly doubled over the past four decades, creating a rising share of public school kids who need these services. The total number of students in special ed went from 3.6 million in the 1976-77 school year, to almost 7.3 million in 2021-22.
This puts a strain on an already fragile system. For instance, 45% of schools nationwide reported special ed teacher vacancies, and 78% reported difficulty in hiring, according to a 2022 U.S. Schools Report from the National Center for Education Statistics.
But there’s good news, too. For one, the law is on your side. There are also untold numbers of dedicated educators who day in and day out commit themselves to giving your child the best education possible. And you’re not alone. Expert advocates nationwide can help you navigate the system’s ins and outs. (See “Advocates” section below.)
Let’s get to it. The below includes info focused on, but not inclusive to, New York State.
The Law
Special Education, which in theory comes at no cost to parents, is governed by the federal Individuals with Disabilities Education Act (IDEA). Passed in 1975, the law makes available a free appropriate public education (FAPE) to eligible children with disabilities and ensures special education and related services to those children.
Who’s Eligible
Infants and toddlers, birth through age 2, with disabilities and their families receive early intervention services under IDEA Part C.
Three- to 21-year-olds with disabilities receive special education and related services under IDEA Part B.
Early Intervention
In New York, to be eligible for services children must have a confirmed disability or established developmental delay, as defined by the State, in one or more of the following areas of development: physical, cognitive, communication, social-emotional, and/or adaptive.
You can contact your municipal Early Intervention Official (EIO) for information about your local program or to refer a child. For information about the statewide program, contact the NYS Department of Health, Bureau of Early Intervention at (518) 473-7016 or e-mail beipub@health.ny.gov.
If your 3-year-old received services from the Early Intervention Program and is in need of special education services, they will need to transition (move) into the preschool special education program. The Early Intervention official from your county must give written notice to the Committee on Preschool Special Education (CPSE) in your local school district that your child may be transitioning. With your consent, a transition plan must be developed no later than three months before your child’s third birthday.
Step 1: Initial Referral: This goes to a district’s multidisciplinary team called the Committee on Special Education (CSE) or the Committee on Preschool Special Education (CPSE). CPSE is responsible for ages 3-5; CSE is responsible for ages 5-21. Some school districts also have Subcommittees on Special Education.
Step 2: Individual Evaluation Process: The Committee arranges for an evaluation of the student’s abilities and needs. (Additional evaluation info can be found here.)
Step 3: Determining Eligibility: It’s in the hands of the Committee, based on evaluation results.
Step 4: Individualized Education Program (IEP): If the child is eligible to receive special education services, the Committee develops and implements an appropriate IEP, based on evaluation results, to meet the needs of the student. Services are to be provided in the least restrictive environment (LRE).
Step 5: Annual Review/Reevaluation: The IEP is reviewed and, if needed, modified or revised by the Committee at least once a year (annual review). The student has a reevaluation at least once every three years, but it may also occur when conditions warrant or when requested by a parent or teacher.
Dispute Resolution Options
The NYS Office of Special Ed is responsible for ensuring a system of due process consistent with New York State law and the Individuals with Disabilities Education Act (IDEA). Due process procedures have been established to provide specific options for resolving concerns or disagreements that arise between parents and school districts about the identification, evaluation, educational placement of, or the provision of a free appropriate public education (FAPE) to a student with a disability or a student suspected of having a disability.
There are three distinct options for special education dispute resolution:
Students with an IEP have several what’s called “exiting options,” programs, and activities. Check them out in the Transition Guide from the Office of Special Education and Rehabilitative Services (OSER), U.S. Department of Education.
Both the IDEA and the Rehabilitation Act require transition services to be available to students and youth with disabilities as they prepare for and enter postsecondary life. But with years of structured support ending and adult services understaffed and underfunded, there’s a reason this period is called “the cliff.”
Transition services require a coordinated set of activities “within an outcome-oriented process” that relies upon active student involvement, family engagement, and cooperative implementation of transition activities, as well as coordination and collaboration between the vocational rehabilitation (VR) agency, the State educational agency (SEA), and the local educational agencies (LEAs).
Planning for these services starts in high school. It must start by the time a student turns 16, but the earlier the better.
Additional resources
101 Answers: How to Get Help at School for Your Child with a Disability This excellent booklet comes from Student Advocacy, a nonprofit legally based education advocacy agency in New York that offers services including representing students and families at EP meetings. (Read more about Student Advocacy below.)
The ARC@School The ARC provides training and resources to help families and other stakeholders navigate the special education system.
Some agencies to call, and some to peruse to keep abreast of helpful seminars and resources:
National
Parent Centers (p. 41): Parent Training and Information Centers (PTIC), Community Parent Resource Centers (CPRC), and Parent Centers are funded by State and Federal grants. They provide workshops on parent rights, necessary services, advocacy and other relevant presentations for parents of children with disabilities. Call them for information and/or assistance.
New York
Student Advocacy This amazing organization, based in Elmsford, N.Y., provides legally-based education advocacy services for youth in Westchester and Putnam counties. Its services are offered free of charge to families, or on a sliding scale.
NYS Special Education Advocates The state advocacy program can help parents of students with disabilities navigate through the school system to determine an appropriate education that meets their child’s needs. It also offers workshops.
Parent to Parent of NYS This statewide network of parents who provide emotional support to families of individuals with special needs often offers special education workshops.
Advocates for Children of New York Its staff of attorneys and education specialists provide free legal and advocacy services, including representation at school-related hearings and appeals, and teaches families what they need to know to stand up for their children’s educational rights.
Special Education News Around the Country
The state of the states includes New York’s new school disciplinary rules, Texas telling autism support teachers in Houston to take a hike, and Maine getting a new special education bachelor’s degree.
Mosaic, a New Garden State News Site, Focuses on Diversity and Disability
A new Garden State news site from NJ.com, Mosaic, is now live. Its mission: To give readers news and information about communities of color, the LGBTQ community, veterans, people living with disabilities and others who contribute to the state’s “magnificent mosaic.”
The site notes that nearly a million New Jerseyans have at least one disability, more than 300,000 are military veterans and more than 340,000 identify as a member of the LGBTQ community. “We [also] have more than 545,000 Jewish neighbors, making us the state with the third-highest percent of Jews, and more than 321,000 Muslims, which makes us the state with the fourth-largest Muslim population.”
Mosaic was created by NJ Advance Media.
Image: pexels.com
A Valhalla, NY, Group Home Wins 5-Year Legal Battle with Town to Exist
The Examiner News reports that a five-year battle waged by the Town of Mount Pleasant against the use of a Valhalla house to serve developmentally disabled adults “came to an end following a decision by the Appellate Division of state Supreme Court that denied the town’s petition to prevent the residential facility from opening.”
Full disclosure: The Boost has a personal connection with the group home, and is as pleased with this outcome as it is dismayed that the town fought tooth and nail to let it exist. You can read about the town’s objections and more in the article.
More News to Know for Week Ending Aug. 26, 2023
States debate how to move forward on paying parents as caregivers, a new venture capital fund focuses on people with disabilities, adults with autism need jobs and more news for the week ending Aug. 26, 2023.
The Cost of Living With a Disability in America Thirty+ years after G.H.W. Bush signed the Americans with Disabilities Act, four Americans with disabilities reflect on the struggle to secure a financial future. (Esquire.com)
A K-12 school curriculum that teaches about people with disabilities, ADHD drug shortages have people worried, the size of North Carolina’s waitlist for services for people with disabilities is hard to comprehend and more news for the week ending Aug. 19, 2023.
Spotlight
Shapiro Administration awards disability-inclusive education While an increasing number of states ban the teaching of minority histories and experiences, Pennsylvania is launching a pilot curriculum for the largest, and most vulnerable, minority: people with disabilities. (pahomepage.com)
In the news this week were articles on the pending U.S. Supreme Court case, Acheson Hotels v. Laufer, in which a civil rights “tester” has sued Acheson Hotels, LLC for failing to make clear whether its hotels were accessible on its website, as required by the ADA. The case, scheduled to be heard in the next session of the court on Oct. 4, 2023, will look at whether the tester can sue despite not visiting, nor intending to visit, the hotels. A sampling:
FYI, I can’t link to it, but Andrew Ross Sorkin’s Dealbook newsletter reported on K. Ventures, a new venture capital firm from a Kennedy family “scion” focused on the disability community.
The Ones We Sent Away When Pulitzer Prize-winning writer Jennifer Senior was 12 years old, she learned about an aunt with intellectual and developmental disabilities who had been institutionalized. (theatlantic.com)
You all, there’s a Special Rodeo for children and adults with disabilities happening Aug. 26 at the Rapid City, S.D., Central States Fair and I am so into it. It’s not the first time at the rodeo for this rodeo (sorry), at which participants are partnered with a “rodeo buddy.” Keep an eye on this space!
Inside the world of reality TV dating shows for people with disabilities, advocates fight the subminimum wage in Connecticut, people with intellectual and developmental disabilities share what “home” means to them, and more news to know for the week ending Aug. 12, 2023.
In their own words: Disabled storytellers share what ‘home’ means to them The Center for Public Integrity held an event on July 26 — the 33rd anniversary of the Americans with Disabilities Act — called “What is Home?” that explored the challenges of finding safe homes for people with intellectual and developmental disabilities (publicintegrity.org)
A Dual Approach for Autism “Within the autism community, two seemingly opposing camps have emerged—adult self-advocates influenced by historic views strongly oppose anything related to the medical model and emphasize the strengths and capabilities of individuals. … What is troubling is that many believe that it must be an either-or scenario.” (newsweek.com)
Kentucky: Kentucky considers Medicaid waiver for children with intellectual, related disabilities The Kentucky Cabinet for Health and Family Services is looking into the feasibility of a Medicaid home and community-based services program for children who have severe emotional disabilities, intellectual or related disabilities and autism spectrum disorder. (I’m kind of gobsmacked that Kentucky doesn’t do this already…?) (richmondregister.com)
LaGuardia’s new Terminal B wins awards for its design and accessibility The terminal is equipped with hearing loops available at all guest experience desks, intuitive departure board displays in two formats along with color coding to support easy interpretation and gate distance information, accessible assistance at kerbside drop-off/check-in service with call button, color-coded wayfinding across the airport, and a calming seating area with sensory stimulation features such as plants and foliage. (airport-world.com)
A physiotherapist studies how exercise can repair the brain “The primary research I’m doing looks at the effect of aerobic exercise on children who have been treated for brain tumors. Aerobic exercise has been studied in a bunch of different clinical populations and it’s thought to stimulate the production of myelin, which is the white matter areas of the brain.” (Bloom blog)
Zen Zone at the Bedford, NY, Music Festival: Oct. 14
A quiet tent with comfortable seating, fidget toys, books and BluePath autism service dogs will be available at the Bedford Music Festival & Taste of Bedford event. Designed to provide a break from the commotion, it’s sponsored by the Bedford Inclusive Initiative and the Bedford PBA, dedicated to supporting neurodiverse community members.
So, who’s playing? The Wailers will headline the festival and four local bands will take the stage: Puppets for Hire, Winston Rider, m80s and Clare Maloney & the Great Adventure.
A Taste of Bedford features local restaurants showcasing their fare and local retailers/vendors selling their wares and services.
Everything You Need to Know About ‘Down for Love,’ Netflix’s New Dating Show Starring People with Down Syndrome
A reality TV dating show starring people with Down syndrome, Down for Love, hits the U.S. Aug. 11 on Netflix. The show, which first aired last year in New Zealand, is the streamer’s second dating show matching up people with disabilities.
Down for Love follows 10 people looking for love or at least a good date. Their matches all have an intellectual disability, “but not necessarily Down syndrome,” series producer Robyn Paterson said in an interview. For some contestants, it’s their first date ever, she said.
DOWN FOR LOVE – a new reality documentary series following several people with Down syndrome as they navigate the trials and triumphs of dating.
Down Under has cornered the market on reality TV disability dating shows. Rather, it is the market. Love on the Spectrum, a show that first aired in the U.S. on ABC and then for three seasons, so far, on Netflix, was created in Australia by Cian O’Clery and produced by Australia’s Northern Pictures. Its first two seasons featured adults with autism from Australia, and its third, from the U.S.
Love on the Spectrum U.S. won three Emmy awards in 2022: Outstanding Unstructured Reality Program, Outstanding Picture Editing for Unstructured Reality Program and Outstanding Casting for a Reality Program. (Watch a panel with O’Cleary below.)
Its positive reception is good news. However, not everyone was fully onboard. A good summary of Love on the Spectrum critiques can be found in a review in Spectrum News written by Sara Luterman, a reporter with autism.
The show’s problems, she wrote, include a lack of representation (mostly everyone is white and straight), inaccurate or misleading autism facts and how it’s” frequently infantilizing.” Overall, though, she noted, it’s kind, and there are “heartwarming” moments.
Down for Love is produced by Attitude Pictures, which calls itself the largest producer of disability-focused content in the world. The production worked in consultation with the New Zealand Down Syndrome Association (NZDSA) in part to help ensure it remained respectful of its contestants and their needs.
“At heart [the show is] about diversity and love,” series creator and producer Paterson said in the same interview, “People with Down syndrome need to be treated and respected equally. Our search for love is universal – no matter who we are.”