Persons with Exceptional Needs
Request for IEP Services
Template Letter for a Request for Assessment (Disability Rights California)
Special Education Rights and Responsibilities
Special Education Rights and Responsibilities (Disability Rights California)
Emergency Preparedness Guide
Emergency Preparedness Guide California Department of Aging
In Home Supportive Services (IHSS)
IHSS Disability Rights California
IHSS Paramedical Services Disability Rights California
IHSS Request for Order and Consent Paramedical Form
Career Pathways for IHSS providers (ends September 30, 2024)
**Please note, on September 16, 2024 CDSS abruptly ended the Career Pathways program September 16, 2024
All of the money for the IHSS Career Pathways Program has been spent sooner than expected. Therefore, no more classes will be offered after September 16, 2024. If you have already signed up for a class for September 17, 2024 or after you will be disenrolled and the class will be canceled.
For more information on training and incentive claims, click here.
Thank you for your continued dedication and support and participation in this program. We truly appreciate the important work you do to keep IHSS recipients safely in their homes.
Sincerely,
The California Department of Social Services
California Code, Welfare and Institutions Code - WIC § 12316.1
Translation Services
New law moves toward better translation of special ed documents, but families want more October 28, 2024
"California schools will soon have a template for special education programs translated into 10 languages in addition to English.
Advocates and parents of children with disabilities who speak languages other than English say it is a tiny step forward, but there is still work to be done to fix long waits and faulty translations experienced by many families statewide."
Governor Newsom signs legislation to strengthen support, opportunities, and safety for Californians with disabilities September 28, 2024
"Additional legislation signed today to support the disability community and a more inclusive California for All:
SB 445 by Senator Anthony Portantino (D-Glendale) – Special education: standardized individualized education program template: translation."
Landmark Settlement Reached In Long Fought Battle for Equitable Services for Disabled Latinx Children and Young Adults September 23, 2024
"The Padres coalition also reached its goal of improving overall community engagement for regional center families. The parent group obtained more parent trainings and workshops, increased participation in regional center committees and board meetings, and better collection of information through community surveys and focus groups. Significant for families who use a language other than English, the settlement promises the same access to information and participation opportunities equal to English-speaking families."
Left Powerless: Non-English–Speaking Parents Denied Vital Translation Services September 19, 2024
"Despite their legal heft, these provisions are often misunderstood or flagrantly violated, experts and parents told The 74. And some argue the guidance doesn’t go far enough.
“Quite frankly, the verbiage is left up to interpretation,” said Revolución Educativa’s McGhee. “So if I were passing laws, I would be much more specific about the requirements.”"
California Association for Parent-Child Advocacy (CAPCA) letter to Office of Administrative Hearings (OAH) Translation and Interpretive Services September 5, 2024
Cherry Creek School District agrees to provide better translation services to parents via Justice Department settlement (Colorado) May 23, 2024
"Under the agreement, Cherry Creek must identify parents with limited English proficiency who are looking at enrolling their children in the district; provide translation and language assistance for those parents during suspension or expulsion proceedings; and distribute surveys and hold listening sessions in more than a dozen languages to better understand communication needs."
Settlement Agreement Between the United States of America and Cherry Creek School District No. 5 (Colorado) May 22, 2024
Immigrant parents report faulty, slow translation of special education documents EdSource November 17, 2023
"The bill passed the Senate, the Assembly Education Committee and the Assembly Appropriations Committee with no opposition. But an analysis by the Assembly Appropriations Committee found that the bill could cost the California Department of Education $409,000 annually and could cost school districts between $6 million and $16 million, which might also have to be reimbursed by the state. Believing there was a risk the bill could be vetoed this year because of those costs, Portantino said he chose to make it a “two-year bill,” giving it more time to be discussed in the Legislature and with Gov. Gavin Newsom."
Understanding SB 445 April 10, 2023
" SB 445 would require local educational agencies (LEAs) to provide parents or guardians with a translated copy of the IEP including any revisions, within 30 days of the IEP meeting, if requested, or within 30 days of a later request, if the translation requested is in one of the top eight non-English languages in the district. The bill would also require IEP documents to be translated by a qualified translator, as defined in the bill. "
Legal settlement requires Chicago to offer translation services to parents of students with disabilities (Chicago, Illinois) July 1, 2022
"That should no longer be the case, thanks to a legal settlement reached earlier this month between Chicago Public Schools and a group of families, including Przytulinski’s. It will guarantee language interpretation services to the families of students with disabilities. The Illinois State Board of Education reached a similar settlement late last year.
The settlement mandates Chicago Public Schools provide language translation services for non-English speaking parents at all IEP meetings, which are required by federal law for students with disabilities who are receiving services.
Under the settlement, CPS also agreed to hire 10 full-time certified interpreters or translators, five of whom will serve only in those roles and provide translated versions of documents including reports, evaluations, and recommendations within 30 days of IEP meetings.
Parents can also request the interpreter not be a part of the IEP team. It can be difficult for interpreters to be impartial if they are playing a dual role, which makes the provision a critical component of the settlement, said Olga Pribyl, program vice president of the special education rights clinic at Equip for Equality. "
Settlement Agreement Between the United States of America and San Bernardino City Unified School District December 15, 2022
15. The District will take the following steps to ensure that EL students with disabilities receive appropriate services and that limited English proficient (“LEP”) parents/guardians are included in the Individualized Education Program (“IEP”) planning process, or the planning process under Section 504 of the Rehabilitation Act of 1973 (“Section 504”):
A. When the District notifies a parent/guardian of an EL or an LEP parent/guardian of an IEP meeting, the notice will be in the parent’s/guardian’s primary language and will inform the parent/guardian of the right to obtain an interpreter at the IEP meeting. This notice will explain to the parent/guardian how to request an interpreter. When parents/guardians make such requests with reasonable notice (i.e., at least three days prior to the IEP meeting
B. The District will reasonably modify current practices so that it can provide a translated copy of the IEP template at least five days before the IEP meeting to LEP parents/guardians who speak Spanish. After the IEP meeting, upon the request of a parent/guardian, the District will provide a copy of the completed IEP translated in the parent’s/guardian’s primary language within a reasonable period of time, but no later than 10 business days following the District’s receipt of the request. The District may use a translation template for whichever portions of the IEP are common across all IEPs." (Pages 7-8)
OSEP Office of Special Education Programs Dear Colleagues Statement of Interested Letter June 14, 2016
Whether a document is “vital written material” depends upon the importance of the program, information, encounter, or service involved, and the consequence to the LEP person if the information in question is not provided accurately or in a timely manner. Accordingly, in theSOI, the United States declares that a student’s IEP is vital, and that other documents related to a student’s special education program, as well as their regular education program, will also often meet these criteria because they will be vital to parents understanding their children’s education placement, progress, and recommendations from the district.
SB 445 Special education: individualized education programs: guidance for translation services https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240SB445
SB 445 requires the California Department of Education (CDE) to develop and issue guidance on best practices for local education agencies (LEAs) in translating a pupil’s IEP documents into the native language of limited English proficient (LEP) parents.
San Francisco Unified School District and County Office of Education Translation and Interpretation Board Policy March 1, 2022
RESOURCES
American Association Of Interpreters And Translators In Education
ASTM Standard Practice for Language Service Companies
Spanish speaking organizations in the Inland Empire
AI (Artificial Intelligence) PROJECTS AND RESOURCES
Equitable Engagement Lab at the Burnes Center for Social Change
Chairman Peters Opening Statement As Prepared for Delivery Full Committee Hearing: AI and Service Delivery January 10, 2024
Educate. Advocate. Sponsored Bills Signed into law by Governor Newsom in 2023
AB 611 Special Education: nonpublic, nonsectarian schools or agencies: change in certification status: parental notification. Signed into law by Governor Newsom
https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240AB611
This bill will require local educational agencies to alert parents and/or guardians via email or mail within 14 days of becoming aware of any change in certification status of a nonpublic school.
AB 1466 Pupil discipline: restraint and seclusion:reporting. Signed into law by Governor Newsom https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202320240AB1466
This bill will require local school districts to post the same data that they submit to the California Department of Education on to their website annually.
Gender
"...You know I mentioned for example, currently in our system we only ask about gender being male and female. But there's obviously a number of questions about that and for minors in front of their parents for example where you know how we ask that and in particularly in different cultures could be extremely sensitive so a lot of training for service coordinators about how to ask that, when to ask that, when not to ask that. Uh how to do it publicly or privately in the course of the conversation um you know that's just one example... so a lot of training.." Pete Cervinka, Chief of Data Analytics and Strategy DDS Department of Developmental Services California Senate Budget Human Services Committee Hearing March 21, 2024
California Budget 2024
Nearly $1 billion in funds left unspent by centers for disabled Californians LA Times August 20, 2024
"But to attorney Valerie Vanaman, who represents people with disabilities and their families, leaving hundreds of millions of dollars unspent is a symptom of a system “that is falling apart.”
Vanaman said the pandemic led to regional centers losing experienced professionals and that working remotely had harmed the kind of collaboration needed to make sure people get the services they need.
“What you’re seeing is that where services should have been put together, where the money would have been spent, there was no internal structure to make it happen,” Vanaman said.
"Nearly $1 billion allocated for regional agencies that purchase supportive services for Californians with developmental disabilities went unspent in a recent year and was ultimately returned to the state, even as some disabled people and their families said they needed more help."
"Department of Developmental Services Provider Pay Delay—Delays implementation of increased provider pay by six months to January 1, 2025."
‘Breaking a Promise’: California Deficit Could Halt Raises for Disability Workers May 2, 2024
"Families of people with intellectual and developmental disabilities say Gov. Gavin Newsom is reneging on a scheduled raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.
Citing California’s budget deficit, the Democratic governor wants to save around $613 million in state funds by delaying pay increases for a year for about 150,000 disability care workers. The state will forgo an additional $408 million in Medicaid reimbursements, reducing funding by over $1 billion.
Some lawmakers say this decision will increase staff turnover and vacancies, leaving thousands of children and adults with disabilities without critical services at home and in residential facilities. Disability advocates warn it could violate the Lanterman Act, California’s landmark law that says the state must provide services and resources to people with disabilities and their families."
California’s proposed budget cuts would leave many autistic young adults without a safety net April 17, 2024
"The proposed delay in the rate increase would reduce state funding for those programs by $612.5 million while sacrificing $408 million from the federal government, resulting in a total reduction of $1 billion, according to the Legislative Analyst’s Office.
This proposed delay places a burden on already challenged regional centers, service providers and staff “who have case loads that are way beyond what they should be in order to serve the community,” Rollens said.
There’s also the added fear that the final rate increase won’t take place next year.
“If the economy continues to go down or we’re faced with the same level of deficit next year, there’s no guarantee that this delay doesn’t turn into a permanent, ‘Sorry, we just can’t give you the money,’ type situation,” Rollens said.
Without adequate staffing, young adults who aren’t getting support are often home without assistance, and parents are left scrambling for care, Lindsey said."
Disability Rights California's Summary of the Governor's May Revision to the Proposed 2024-25 Budget May 30, 2024
California State Senate Early Action Plan Shrink the Shortfall March 14, 2024
Disability Service Provider Rate Budget Request Letter March 8, 2024
Disability Rights California's Summary of the Governor's Proposed 2024-25 Budget January 31, 2024
Self Determination Resources
DDS Self Determination (Department of Developmental Services)
Independent Facilitators (listing)
Presentation
Legislation Presentation August 11, 2023
Kristie Sepulveda-Burchit of Educate. Advocate. Presentation for (CAPCA) California Association for Parent Child Advocacy
RESOURCES and REPORTS
AI and it's impact on Special Education Law
Opinion of Rob Bonta Attorney General remote participation for a person with a disability per the ADA July 24, 2024
Rate Setting Considerations for Remote Delivery of Services in 1915 (c) Waiver Programs November 13, 2024
HUD Grantees (by state and county)
STANDARDIZED INDIVIDUAL PROGRAM PLAN TEMPLATE AND PROCEDURES Department of Developmental Services
How Trauma Impacts School Performance
Equitable Services for Students with Disabilities
Public Counsel Special Education & Related Services: Advocating for Students with Disabilities (English)
2024-25 Lanterman Coalition Public Policy Priorities
2024 THE CASE FOR INCLUSION Transforming Temporary Progress into Long-Term Sustainability
Department of Developmental Services REMOTE SERVICES through June 30, 2025
Policy Brief: A Voluntary License Identifier to Support People with Disabilities
CALIFORNIA COLLABORATIVE FOR EDUCATIONAL EXCELLENCE Statewide System of Support Resource Hub
Fiscal Year 2023-2024 In-Home Supportive Services Program Public Authority Allocations
2022 Report to Congress on Supportive Services for Individuals with Autism
FEMA Disaster Preparedness Guide for Adults
A Parent's Guide to Special Education (English)
(Spanish)
US Department of Education STATE GENERAL SUPERVISION RESPONSIBILITIES UNDER PARTS B AND C OF THE IDEA July 24, 2023
The Impacts of Extreme Weather Events on People with Disabilities May 4, 2023
CALIFORNIA DEPARTMENT OF DEVELOPMENTAL SERVICES EARLY START INFORMATION PACKET APRIL 2023
The Department of Developmental Services Has Not Adequately Reduced Barriers to Some Families’ Use of In-Home Respite Services Auditor of the State of California August 30, 2022
Self Determination Fair Hearings Report through 2022
Framework to End Health Disparities of People with Disabilities National Council on Disability February 2022
State of the Workforce 2022 National Core Indicators Intellectual and Developmental Disabilities
California Statewide Individualized Education Program (IEP) Workgroup Report October 1, 2021
Special Education Finance in California Public Policy Institute of California November 2016
Websites
Epilepsy and Autism: Is There a Relationship?
DMV Lapse of Consciousness Disorders
Restraint and Seclusion in California
"OCR determined that the district placed three of its students with disabilities in nonpublic school settings and violated their rights under Section 504 and Title II because the district:
- Failed to ensure that district staff making placement decisions for these students had access to and carefully considered information obtained about the use of physical restraint and/or seclusion with these students.
2. Separately failed to ensure that those making decisions regarding behavioral interventions for these students were knowledgeable about each student, the meaning of the evaluation data, and the placement.
3. Failed to reevaluate these students to determine whether the repeated use of restraint and seclusion for these students denied them a FAPE and if additional aids and services were appropriate to provide a FAPE. And,
4. Denied a FAPE to all three students based on the above failures and resulting harms to the students."
"Throughout the investigation, OCR found that one of these students died after being subjected to a prolonged restraint that was preceded by at least four other restraints by the nonpublic school of which the district was aware. It was further found that the other two students were subjected to repeated restraints and seclusions, costing each student multiple total days less classroom instruction than their peers who were not subject to such restraints and seclusions. OCR found that that district did not visit the nonpublic schools following notification of their repeated use of restraints and seclusions."
Office Of Administrative Hearings
OAH Special Ed Decisions Database
United States Court of Appeals For The Ninth Circuit
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From: Nancy Fellmeth, FEAT President, on behalf of
FEAT's Board of Directors
Re: FEAT's Amicus Brief on behalf of Andrew Findley
For a quick 78-second preview of state government overreach, watch clip:
What is an amicus brief? An amicus brief is presented to the Court by an interested party, on behalf of a larger group, which is the families of FEAT. It gives FEAT the opportunity to present the Court new information and to offer a perspective that has previously not been addressed. The brief is presented to the Court by an attorney when an organization is involved. Our attorney prepared the final document to be presented at no charge to FEAT because she believes in the cause. We thank her for that invaluable service.
What is FEAT's position in this case? FEAT believes that best practices for behavioral therapy are not being followed and offers peer reviewed research to support our position. In addition, we discuss the effect this has on all other aspects of Andrew Findley and his family’s lives. We thank those professionals who have helped us with research so we can better understand complex behavioral issues. In the process, we learned more about the effects of choice on behavior and invite you to learn something new as well.
Please read FEAT's amicus brief, which takes about five minutes:
Actions Speak Louder: Send Governor Newsom a quick message by phone or online asking him to personally investigate Andrew’s case. Click here for instructions and sample text.
Let your respective legislators know how you feel about this issue and ask for their help to investigate existing cases like Andrew’s where the family wishes to have their family member home with them.
There must be a more family friendly way to deal with these disagreements that doesn’t hurt the very person we should all be focused on helping. Thank you for your time and responsiveness.
ABC10 Docuseries: The Price of Care
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Public Records Act
September 28, 2024
"Create Historic Transparency, Accountability, and Equity in Support Services for People with Intellectual and Developmental Disabilities: The State’s regional centers that provide support services to people with intellectual and developmental disabilities will now be subject to the Public Records Act. This change will increase public transparency, accountability for outcomes, and equity of services in all communities. California’s service system is funded with approximately $15 billion annually to support 400,000 people with Down Syndrome, autism, and other developmental disabilities in their homes, schools, jobs, and communities.
The state will also begin to review and update biannually the provider rate reform study, beginning in 2025. The updated rate model will be posted on the Department of Developmental Services (DDS) website."
AB 1147 by Assemblymember Dawn Addis (D-San Luis Obispo) – Disability Equity, Transparency, and Accountability Act of 2024.
AB 2423 by Assemblymember Devon Mathis (R-Visalia) – Developmental services: rates.
California Regional Centers may become subject to public transparency laws September 18, 2024
"I would like to know whether these (regional center) agencies have had complaints filed against them, whether people have died under their watch, whether people have been abused while they are in these programs. We don't have access to this kind of detailed information," said Mark.
It's why she's urging Gov. Newsom to sign AB 1147.
"Governor Newsom, this is what you stand for," said Mark. "When you were elected as governor, you talked about accountability and transparency of government funds, and this is a way to ensure that the 450,000 people with developmental disabilities in the state of California are actually restoring trust in the systems that are supposed to serve them."
Disability equity activists push for bill to boost transparency in California September 15, 2024
"The centers, which are taxpayer funded, provide disability services, but because they are nonprofits, they aren't subject to the state's transparency rules. Lugo said that loophole has allowed the centers to escape accountability. He said he was often not told about services, and now he wants to know why.
"Had I been offered the services I was entitled to," he said, "I believe my life could have been and would have been completely different.""
PD Editorial: Bring transparency to disability centers September 15, 2024
"It’s long past time that they provide full accountability of their spending and service quality — and receive the necessary funding from the state Legislature to do the job right."
Editorial: State’s disability centers should abide by Public Records Act September 6, 2024
"In any case, if the records belong to the public — as they should, given that the centers are using the public’s money to do public work — the centers must make them available. Some documents, like desk manuals, could easily bypass any costly request process if they are simply posted on the state Department of Disability website.
More reform to the state’s disability bureaucracy is warranted and will come in better budget times. For now, both houses of the Legislature agree that public records disclosure is an important step forward. Newsom ought to appreciate that the biggest budget-busting portions of the bill are on hold, and that agencies providing state services should be subject to state disclosure laws.
Articles of Interest
Disney Fans With Disabilities Irate Over Pass Changes: ‘We Had The Worst Day Ever There’ September 11, 2024
"But the changes by Disney have left members of the disability community feeling alienated, say Laura Rothstein and Julia Irzyk.
The mother-daughter legal team co-authored “Disabilities and the Law,” which focuses on the Americans With Disabilities Act. Rothstein, professor of law emeritus at the University of Louisville’s Brandeis School of Law, says people with disabilities denied DAS passes have a credible argument that Disney is not complying with the ADA.
“They’ve made an accommodation arrangement for certain populations,” she said, “and don’t have any realistic reasonable accommodation mechanism for other disabilities.”
Rothstein said the ADA requires an individualized assessment of a “reasonable accommodation” request and an equitable discussion before making a determination.
She feels the DAS pass interview process is lacking because Disney does not accept medical paperwork.
A Disneyland spokesperson said that Disney understands its “obligations under all applicable laws, including the ADA, and are in compliance.”"
Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth August 27, 2024
"Judy Mark, president of the advocacy group Disability Voices United, argued it is counterproductive to try to stabilize a child away from his or her family. If at all possible, she said, California should be ensuring constant support in the home, which she argued would also be less costly than caring for a child in a STAR facility.
But disability services providers say that getting such caregivers has continued to be a challenge, with state rates for such workers outstripped by what they can earn elsewhere. Increases in those provider rates have been slowly phased in over time, with the next bump slated for January.
In many cases, "what you'd want to see is somebody, 24 hours a day, in the home helping the parent," said Larry Landauer, executive director of the Regional Center of Orange County. But "that's where we have been just drastically short on staffing."
All the gaps in the system can come to a head when young people with developmental disabilities hit puberty, especially if they face "the inability to communicate in such a complex and confusing time," said California Commission on Disability Access member Hector Ramírez, who is autistic and lives in the San Fernando Valley.
If autistic teens and their families cannot get the support they need, Ramírez said, it "has compounding consequences that result in people just getting worse — when they shouldn't be getting worse.""
Opinion: How to Build An Equitable Service System for Californians with Developmental Disabilities July 29, 2024
"First and foremost, the plan should preserve people with disabilities’ entitlement to needed services and supports, as defined in the Lanterman Act. This guarantee is the only one of its kind in the nation and the core strength of our service system. It makes service possible every day for the people we serve and their families."
Animal Magic: How Animal-Assisted Therapies Are Transforming Autism Care July 15, 2024
"The emerging evidence supporting animal-assisted activities and therapies as an effective intervention for autism spectrum disorder represents a significant step forward in ASD management strategies. Its ability to address multiple core symptoms simultaneously, coupled with its non-invasive nature, positions AAAT as a valuable complement to traditional treatments."
DREDF Urges Ninth Circuit to Reverse District Court Order Finding Regional Centers and Their Vendors Not Covered by the ADA July 12, 2024
"Title III of the ADA governs private businesses and nonprofits such as the regional centers and vendors. It prohibits disability discrimination in both their physical premises and in the programs and services they offer.
In Guthrey, a woman with developmental disabilities and her mother/conservator sued Alta California Regional Center and two of its vendors alleging discrimination in violation of Title III of the ADA and other federal and state laws. The district court for the Eastern District of California dismissed the complaint, holding that regional centers and their vendors are not subject to Title III because their services are provided off-site, and not in their physical offices. The district court also held that because Guthrey could not establish her ADA claim, her other disability rights claims failed.
DREDF’s brief demonstrates that this is a misinterpretation of Title III; the statute does not require that covered services be provided on the physical premises of a covered business. The brief further argues that this misinterpretation radically limits the application and effectiveness of the ADA, contrary to the intent of Congress that it be a clear and comprehensive mandate for the elimination of disability discrimination."
Behavioral therapist charged with sexual abuse of handicapped child in Riverside June 28, 2024
"Authorities have charged a behavioral therapist with sexual abuse that occurred during a therapy session last month inside the home of a severely handicapped and non-verbal girl under 10 years old, said the Riverside Police Department Friday....
"Investigators say Takata has been employed as a behavioral therapist for about three years, working primarily with severely disabled children. Police believe there may be other victims who have not come forward yet."
San Jose autism therapist, school aide arrested on child sexual assault charges June 12, 2024
"A San Jose therapist for autistic children and elementary school aide was arrested following an investigation into a child sexual assault, police said Wednesday.
San Jose police said officers responded on Saturday to a report of a sexual assault of a girl that happened the day before. Officers determined the girl was assaulted by her therapist during a session at the victim's home. "
They Really Don't Want Parental Input June 6, 2024
"Instead of getting input from the CAC, the District provided a link to a Google Form where individual members could provide feedback. However, this task was made impossible by the fact that the document did not indicate in any way how it had been changed. Presenting a markup of the plan clearly showing what had been deleted or added would have allowed community members to ascertain what they needed to comment on quickly. Without having access to tracked changes, they would have had to compare the 191-page document line by line to its predecessor to provide informed feedback."
Disability workers call on Gov. Newsom to reinstate pay raises in budget proposal May 31, 2024
""The system is set up to really silence them," he said. "During the years of the institute, we used to put them away in buildings and ignore them and I feel the same is happening now with the budget cuts we've seen over decades. This latest one, we're not listening to this population."
Hershey said on average, workers who care for disabled people make around $18-$19 an hour.
He said last month, his organization turned away 260 people because they just don't have the staff to care for them. He said currently they have 120 openings."
NHS cannot meet autism or ADHD demand, report says April 4, 2024 (United Kingdom)
"The extraordinary rise in demand for autism assessments and ADHD treatments in England has overtaken the NHS's capacity to meet it, a think tank says.
Since 2019, there has been a five-fold rise in people waiting to see an autism specialist and a 51% increase in prescriptions for ADHD medication, according to the Nuffield Trust.
Growing backlogs and longer waiting times are negatively impacting people's daily lives, it warned."
‘I should decide if my vulnerable adult son has a Covid vaccine – not a judge’ April 3, 2024 (United Kingdom)
"Her fear about the vaccine stems from whether the messenger RNA vaccine(mRNA) – which essentially tells a cell how to make a protein to trigger an immune response to Covid – is suitable for someone suffering a chromosomal abnormality and a heart condition."
Nonspeaking People With Autism May Know More Than Previously Thought April 2, 2024
"“Our study shows that nonspeaking autistic people’s capacity for language, for learning and for literacy has been seriously underestimated,” Jaswal said. “With appropriate instruction and support, it might be possible to harness these skills to provide access to written forms of communication as an alternative to speech. Learning to express themselves through writing would open up educational, employment and social opportunities that nonspeaking autistic people have historically not been given access to.”"
"The lawsuit stated that their sons were 'assaulted and battered' by the caregiver and that his colleagues did not step in to stop the abuse.
'I’m actually really grateful that somebody recorded it — because both of our sons are not good historians,” Laura Topete said. 'They would have gotten away with it.'"
SSI/SSP Grants: Moving in the Right Direction, but Still Not Enough March 2024
"Despite the recent increase, grant levels remain insufficient due to damaging budget cuts made by the state during the Great Recession. During this period, the state eliminated the Cost of Living Adjustment (COLA) for the SSP grant. Had the COLA been preserved, grant levels would have already exceeded the FPL. Restoring the COLA can ensure that grants keep up with rising costs especially given recent inflation trends."
Updating SSI Would Improve the Economic Resilience of Low-Income Women March 7, 2024
"Program rules that discourage the accumulation of assets may reinforce hardships that female beneficiaries experience given that, in general, women tend to face greater difficulties building wealth than men.18 Additionally, women with disabilities are more likely to be poor than both men with disabilities and individuals without disabilities; stringent income and asset limits, therefore, may have an even greater negative effect."
Federal court dismisses case against Iowa governor’s ban on school mask mandates IOWA February 27, 2024
"Reynolds appealed, and the federal court’s ruling orders dismissal, saying those who brought the lawsuit didn’t have standing to sue the state over the law. While COVID-19 remains an “ever-present concern in society,” the court said, the general risks “are not enough to show ‘imminent and substantial’ harm for standing” since they are speculative.
The court also dismissed the claims saying they did not clearly establish a connection between Reynolds’ action – the law or its enforcement – and the alleged injury of enduring COVID-19 and its risks."
Why One School District Spent $1 Million Fighting a Special-Education Student February 23, 2024
"Sharon Landers and Joseph Gagliano never expected to spend years in court fighting their public-school system.
But when the Irvine Unified School District initially disputed their daughter had dyslexia and denied her the special-education assistance they felt she needed to graduate, they hired a lawyer. They hoped to reach a quick settlement.
Instead, the district appealed every ruling that went in the family’s favor, taking the case to a federal appellate court, one step below the U.S. Supreme Court.
Irvine Unified has now spent more than $1 million in legal fees fighting Landers and Gagliano, who requested that the district pay about $40,000 a year for their daughter to attend a specialized private school to address her learning disabilities if it wouldn’t provide the help itself."
Caregiving Pressures Mount For Families Of Those With IDD January 22, 2024
"With fewer and fewer services available for individuals with developmental disabilities, a survey of thousands of caregivers across the country finds families increasingly strained.
Caregivers say they’ve taken on more themselves and the quality of life for the person they support has declined since the COVID-19 pandemic upended many disability services.
Nearly all caregivers report that they are stressed with a growing number indicating that they are “very stressed.” More than half say that they are very or extremely stressed."
Six Flags Sued Over Disability Access Policy January 16, 2024
The complaint indicates that I.L. applied for and received an Individual Accessibility Card from IBCCES, but that on multiple visits to Six Flags Magic Mountain employees declined him accommodations because they said he didn’t look like he should qualify for the Attraction Access Program. In one instance, the lawsuit states that a park employee ripped up the Individual Accessibility Card and told I.L. that “he did ‘not look disabled enough’ to have the listed accommodations.”
"In conclusion, our study presents evidence that the COVID-19 mRNA BNT162b2 vaccine impacts the WNT pathway and BDNF levels in rats, with particularly pronounced effects observed in males. These male-specific outcomes, including autism-like behaviors, reduced neuronal counts, and impaired motor performance, emphasize the potential neurodevelopmental implications of the vaccine, aligning with existing literature on the roles of the WNT pathway and BDNF signaling in neurodevelopmental disorders."
State Superintendent Tony Thurmond Appoints Special Education Local Plan Area Director Dr. Rachel Heenan as New Director of Special Education Division (CALIFORNIA) January 5, 2024
"State Superintendent of Public Instruction Tony Thurmond announced that he has appointed Dr. Rachel Heenan as the new director of the Special Education Division at the California Department of Education (CDE). The Special Education Division provides information and resources to serve the unique needs of individuals with disabilities so that each person will meet or exceed high standards of achievement in academic and non-academic skills. Dr. Heenan will support the CDE's efforts to aid schools and engage families and educators in ways that ensure the unique needs of students with disabilities are met."
Inadequate SSI/SSP Grants Leave Californians Unable to Afford Basic Needs January 2024
"California’s aid to low-income seniors and people with disabilities cannot compete with the high cost of housing. The Supplemental Security Income/State Supplementary Payment (SSI/SSP) grants help over 1 million low-income older adults and people with disabilities pay for housing and other necessities. However, the current individual grant of $1,183 is less than the Fair Market Rent (FMR) for a studio apartment in 25 counties."
A rift over ‘profound autism’ reveals a community’s deeper divide Washington Post November 18, 2023
"At the heart of the divide is a deceptively simple phrase: “profound autism.”
Parents such as Leary believe recognizing some people as having profound autism would help target more research and support for children like theirs who are nonverbal, intellectually disabled and in need of constant supervision. In a paper in the journal Public Health Reports this year, researchers estimated that nearly 27 percent of 20,000 autistic 8-year-olds whose records they analyzed could be categorized as having profound autism.
Leaders of the Autistic Self Advocacy Network (ASAN), however, reject the phrase, calling it dangerous and misleading.".....
"Parents including Leary and Singer insist that, while they respect the achievements of autistic adults able to advocate for themselves, they need to speak on behalf of children unable to do so."
Statement on the situation of persons with disabilities in Israel and the occupied Palestinian territory October 27, 2023
"We stress that an immediate ceasefire, including cessation of all hostilities by all parties, is the most effective and immediate way to protect and ensure the safety of all civilians including those with disabilities.
We call on all parties to fully respect their obligations under International Humanitarian Law and human rights law, including the United Nations Convention on the Rights of Persons with Disabilities, – in particular Article 11 of that treaty, as well as the United Nations Security Council Resolution 2475 on persons with disabilities during armed conflict. Nothing justifies targeting civilians and denial of their very basic human needs and rights. "
Parents of special ed students who don’t speak English face another hurdle October 25, 2023
"Nationwide, roughly 1 in 10 students who qualify for special education also identify as English learners, according to federal education data, and that share is growing. About 791,000 English learners participated in special education in 2020, a jump of nearly 30% since 2012."
Federal Court Finds School Policing Violates Disability Rights Laws October 24, 2023
"In its decision, the Court found Defendant MVUSD discriminates against students with disabilities in the following ways: (1) Allowing teachers to refer disabled students to school police for disability-related behaviors; (2) failing to train school police about students with disabilities; and (3) authorizing school police to physically restrain, handcuff, and/or refer students with disabilities to law enforcement for students exhibiting disability-related behaviors. As a result of MVUSD’s policies and practices, students with disabilities, especially Black students with disabilities, are placed in handcuffs and referred to police at staggering rates."
Payment Rates for Medicaid Home- and Community-Based Services: States’ Responses to Workforce Challenges October 24, 2023
"Long-standing workforce challenges in Medicaid home- and community-based services (HCBS) were exacerbated by the pandemic and addressing them is the top priority for most state HCBS programs. New flexibilities combined with funding provided through the American Rescue Plan Act helped states enact new policies to address those issues during the pandemic, but many of those policies are ending and federal funding will expire. This issue brief describes states’ ongoing efforts to respond to the workforce crunch and how they pay HCBS workers, which are central challenges in ensuring that HCBS services are accessible to the 4 million Medicaid enrollees who use them. The data come from the 21st KFF survey of officials administering Medicaid HCBS programs in all 50 states and the District of Columbia, which states completed between May and August 2023. The survey was sent to each state official responsible for overseeing the administration of HCBS benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities)."
The USPSTF anxiety recommendations do not address people with intellectually disability -- A New JAMA viewpoint shows how ridiculous academics are becoming September 26, 2023
"At some point we have to admit we fail people by not running randomized studies. We have failed the general population, and of course we failed people with intellectual disabilities.
Put another way: USPSTF is barely able to make recommendations for average risk people. They don’t have specific guidance for women with Li Fraumeni or other cancer syndromes, now you want them to issue guidance for doctors taking care of people with intellectual disabilities who might be anxious?"
Emergency room doctors beg for help treating children with mental health illnesses August 16, 2023
"She said that the number of kids seeking psychiatric emergency care in her ER has grown from approximately 30 a month in recent years to 30 a day...."
"Jenkins said that children as young as six are coming in, often talking about suicide.
"This crisis is only getting worse," she said. "It's not getting better."
The call for help comes as the number of children and teenagers with mental health problems skyrockets. A February study from the Centers for Disease Control and Prevention, for example, found an "unprecedented level of hopelessness" and suicidal thoughts among the nation's youth.
"The bulk of these children are coming in with depression, anxiety and trauma," Jenkins said."
Millions of kids are missing weeks of school as attendance tanks across the US August 11, 2023
"In New York, Marisa Kosek said son James lost the relationships fostered at his school — and with them, his desire to attend class altogether. James, 12, has autism and struggled first with online learning and then with a hybrid model. During absences, he'd see his teachers in the neighborhood. They encouraged him to return, and he did.
But when he moved to middle school in another neighborhood, he didn’t know anyone. He lost interest and missed more than 100 days of sixth grade. The next year, his mom pushed for him to repeat the grade — and he missed all but five days.
His mother, a high school teacher, enlisted help: relatives, therapists, New York’s crisis unit. But James just wanted to stay home. He's anxious because he knows he's behind, and he's lost his stamina."
School districts must offer students with disabilities alternative summer programs when needed August 11, 2023
"When considering the summer program for a disabled student who is educated in an integrated setting during the regular school year, the district must explore options for an integrated summer program even if the district is not offering one.
“The Court’s decision strongly rejects a statewide policy that has resulted in thousands of students with disabilities being educated in segregated classes solely for reasons of administrative convenience,” said attorney David German of Vanaman German LLP."
Extension of 1915(c) Home and Community-Based Services Waiver Appendix K Expiration Dates August 2, 2023
Why is the Federal Government removing parental consent for special education services? July 19, 2023
"Again, while the rule change may seem innocuous - a simple change in accounting that only concerns the bureaucratic administrators processing the paperwork - the implications are in fact far-reaching. Even before the past few legislative sessions and the transgender issue became the focus of our attention, many states had laws that allow for minors to consent to some medical procedures. As more schools offer more health care services, it will further blur the lines between parental rights, the rights of students, and the role of educators as well as government officials generally."
‘Humiliating’: Mom, son with autism thrown out of NJ theater for using ladies’ room July 31, 2023
"Gallinaro said no one in the ladies’ room complained. She said many understood that her son has special needs and needed an adult to help him. But the theater manager let her and her son know she disapproved.
“I asked her if there was a problem. I explained that he was disabled, and she said a grown man should not be in this bathroom,” Gallinaro said.
Gallinaro said the manager called security and then the police to eject them from the movie theater. On the cellphone video, Gallinaro said it was clear to her that the security and police were sympathetic to her plight."
SBHCs and the anti-parent agenda July 13, 2023 (SBHC=School Based Health Centers)
"SBHCs are intended by the Biden-Harris administration to be the “medical home” for your child, including primary health care services, reproductive counseling, dental care, and mental health counseling, replacing what the child would typically receive from providers outside of the school. Even worse, the Department of Education (DOE) has proposed changing the process for students with Individualized Education Plans (IEPs), removing the requirement for schools to receive parental consent before submitting Medicaid claims for reimbursement on behalf of their children. Their stated purpose for doing so is to streamline their process for reimbursement, overcoming a perceived administrative burden, while prioritizing Medicaid as the primary school funding source for providing legally required services to students with disabilities. When schools make Medicaid claims on behalf of the child, care and services parents seek outside of school risk being denied, preventing the child from getting the care he or she needs. "
Childhood developmental disabilities spiked during COVID-19 pandemic, says CDC July 13, 2023
"Diagnosed developmental disabilities in children and teenagers soared during the COVID-19 pandemic, the Centers for Disease Control and Prevention reported Thursday.
Reported delays in physical movement, language, social awareness and brain functioning among children ages 3–17 rose from 7.40% in 2019 to 8.56% in 2021, the CDC said.
Boys were three times likelier than girls to develop autism spectrum disorder, the federal agency noted."
Nearly 1 in 10 U.S. children have been diagnosed with a developmental disability, CDC reports July 13, 2023
"The share of American children who have ever been diagnosed with a developmental disability increased again in 2021, according to a new report from the Centers for Disease Control and Prevention, and now more than 1 in 10 boys have had an intellectual disability, autism spectrum disorder or another developmental delay.
Among kids ages 3 to 17 years old, 8.56% have ever been diagnosed with any developmental disability as of 2021, according to the latest results from the agency's ongoing National Health Interview Survey."
Report: Nearly 10,000 preschoolers with disabilities did not get services last year (New York) June 6, 2023
"Nearly ten thousand preschoolers with disabilities went without the services they were legally entitled to last school year, according to a new report from the organization Advocates for Children.
The report, based on data the education department is required to release annually, found that 37% of all preschoolers with disabilities, or 9,800 went the entire 2021-2022 school year without having a single session of a service the education department is legally required to provide them — like speech, occupational or physical therapy, or visits from a special education teacher.
“The failure to provide these mandated services to these children is really a systemic violation of their legal rights. And unfortunately, we just know that the problem persists this year,” Betty Baez-Melo director of the early childhood education project at Advocates for Children, said."
Many young kids missed early special ed services due to COVID, compounding work for schools May 24, 2023
"Of particular concern, the report’s authors said, was the “striking” 23% drop in Black children who received early childhood special education services, as those students were already much less likely than their peers to get this kind of extra help. By comparison, 18% fewer white children and 3% fewer Hispanic and Asian American children were placed in early childhood special education.
Meanwhile, Asian American infants and toddlers saw the biggest dip in early intervention services — down 21% — though the declines for the youngest children were more similar across race and ethnicity than they were for the older children.
Steven Barnett, a Rutgers professor who co-authored the report, said those racial disparities “are not just unfair, they’re harmful.”
End of Pandemic Food Assistance Could Push Millions over the Hunger Cliff California Budget & Policy Center May 23, 2023
"However, this additional funding came to an end in March, which reduced families’ monthly CalFresh assistance by at least $95, and up to $258 in some cases, amid rising food prices. Already, 1 in 4 families nationwide are reporting increased levels of food insufficiency, according to recent Census data. This figure is on par with states that ended their participation in the EA program before the benefits expired federally. The loss of these additional food benefits is expected to undermine the recent decline in child poverty. With the federal Farm Bill up for reauthorization this year, federal policymakers should improve benefit adequacy in order to keep up the progress made in recent years. In addition, state leaders should take steps to raise the CalFresh monthly benefits and broaden eligibility to currently excluded Californians to avoid pushing millions of families over the hunger cliff."
Education Matters: Del Mar Union found out of compliance with special education laws May 17, 2023
"He said the CDE ruled that the Del Mar Union School District “has illegally been denying disabled students and their parents needed assessments” and has ordered the district to take a number of corrective actions.
Those include stopping the non-compliant practice, training staff on how to respond appropriately to such requests, and providing compensatory education, similar to damages, to the student “to make up for lost services.”
As proof that the district is taking corrective action to address its out-of-compliance practices, the CDE is requiring the district to submit acceptable evidence."
California’s Autism Epidemic Worse Than Ever May 2023
"The 1 in 22 autism prevalence rate for California in the 2020 data represented a noticeable increase from the 1 in 26 rate found in the data collected from the ADDM Network in 2018.
There was no autism prevalence data for California reported as part of the ADDM Network analysis in 2016, but if you use the 1 in 65 autism prevalence rate for kindergartners (generally children 5-6 years of age) provided by the California Department of Education for that year to gauge a five-year trend (2016-2020), it is curious to observe the dramatic increase in autism prevalence in the state post-2016—the year SB 277 was implemented."
New Mexico Advocates Score a Major Win for Direct Support Professionals April 26, 2023
"On April 5, 2023, New Mexico Governor Michelle Lujan Grisham signed House Bill 395 into law. This legislation is the result of a year-long effort of a broad-based coalition (including PHI) of caregivers, advocates, care recipients, legislators and employers working together to strengthen the direct care workforce. By requiring annual data collection on the Direct Support Professional (DSP) workforce and using a wage calculation for these workers who care for persons with developmental disabilities that is 150% of the state’s minimum wage, the legislation advances the policy agenda on wage increases for this vital workforce."
Brownsburg police: Video shows student being told to eat his own vomit with a spoon as staffers watched April 26, 2023
"According to the probable cause affidavit, video showed the incident and the involvement of the five staff members. None of them reported what happened."
Disability Rights Groups Sue to Overturn California’s Physician-Assisted Death Law April 25, 2023
"People who choose to use drugs supplied by a doctor to kill themselves may not realize they could instead receive help managing their pain, potentially including sedation that can render them unconscious, said Ingrid Tischer, one of two individual plaintiffs in the lawsuit.
“It really does create two classes of people” based on whether they are perceived to be terminally ill, said the 57-year-old Berkeley resident. “One side gets [suicide] prevention, one side gets a [life-ending] prescription. And that is discriminatory.”
Tischer was born with a type of muscular dystrophy, a progressive disease that now makes it difficult for her to breathe and requires her to use a walker or a wheelchair.
“I want the care that people get at the end of life, including my own, to be much better,” she said. “And I don’t want assisted suicide to become the new American way of death.”"
Virtual communication left seniors feeling anxious, depressed during pandemic according to Brigham and Women's Study April 21, 2023
"Older adults who frequently used technology to connect with friends, family, and health care providers during the height of the COVID-19 pandemic reported feeling more anxious and depressed than those who sought in-person visits, according to a new study by researchers at Brigham and Women’s Hospital.
Among Americans over 65, virtual interactions — e-mail, phone, and video calls — were associated with increased mental health concerns, according to the study, which analyzed national survey data and was released earlier this month.
“What we found that makes this a little bit interesting is those that were able to maintain face-to-face connections actually reported less risk,” said Rebecca Robbins, assistant professor of medicine at Harvard and associate scientist at Brigham and Women’s division of sleep and circadian disorders."
Study: Milder autism far outpacing ‘profound’ diagnoses AP April 19, 2023
"A first-of-its-kind study released Wednesday shows the rate of such “profound” autism is rising, though far slower than milder autism cases....
The researchers looked at school and medical records from 2000 to 2016 for more than 20,000 8-year-olds identified as having autism spectrum disorders.
They found that the rate of profound diagnoses grew from about 3 cases per 1,000 children in 2000 to about 5 cases per 1,000 in 2016. But the rate of kids diagnosed with milder forms of autism grew from 4 per 1,000 to 14 per 1,000 over those years.
Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers WHITE HOUSE EXECUTIVE ORDER
April 18, 2023
"Sec. 2. Increasing Compensation and Improving Job Quality for Family Caregivers, Early Educators, and Long-Term Care Workers. (a) To increase compensation and benefits for early childhood educators and long-term care professionals who are providing federally funded services:
(i) the Secretary of Health and Human Services, through the Administrator for the Centers for Medicare and Medicaid Services (CMS), shall issue guidance to States on ways to use enhanced funding to better connect home- and community-based workers who provide services to Medicaid beneficiaries;"
My son is autistic – I can’t forgive what lockdown did to him United Kingdom April 13, 2023
"Noah had just turned three when the pandemic began, and he was as happy and settled as a child with his complex needs can be. Noah is non-verbal autistic and has a rare form of epilepsy.
The simple activities that gave him the greatest pleasure in life – going to cafes and seeing other children having fun – were baked into his daily routine and fundamental to his understanding of the world. At our local park, he would stand a little back from the crowd and watch other kids running around, whooping with delight at their games. When he was particularly excited, he’d bob up and down on his toes, whirling his arms like a butterfly swimmer. Watching him watching them was pure joy.
Then came lockdown. Literally overnight, everything that kept him on an even keel was yanked away. His descent was swift and terrifying. As the familiar routines he relied upon to navigate life disappeared, he became increasingly confused and distraught. Within a matter of days, he started biting his arms and banging his head against walls. He would pull coat zippers up and down with such force that the metal would catch his skin causing his neck to be bruised and bleed. "
The Harms of Masking - Part 2 April 12, 2023
"It was a sign of progress that kids like Lizzie could fully integrate into the world, make friends, learn to read, move towards an adult life of semi-independence since the passage of IDEA in 1975. That all reversed in 2020 when these children were shuttered at home and then restricted in ways that cut them off from their peers and the world when they were permitted to go back to school.
During covid, the pro-lockdown, pro-mask, pro-restriction crowd purported to be the most caring. But they turned a blind eye to those with disabilities. And their cruelty will not be forgotten by those who suffered at the hands of it."
California bill to make it easier to place people on psychiatric holds advances March 30, 2023
"Debra Roth, a lobbyist for Disability Rights California, said the bill’s language would lower the standard too far. For example, she noted the bill could cause people who cannot “appropriately” or “adequately” clothe themselves to be placed on a psychiatric hold.
“We think that that is just wrong,” she said. “This bill will subject more patients to the trauma of involuntary detention.”
Other opponents raised concerns that there are currently not enough resources to fund voluntary treatment, and that forcing more people into an already strained system will be ineffective."
Kooth selected to bring mental health care to all 13-25s in California March 16, 2023
"Founded in 2002, Kooth is a pioneer in youth focused digital behavioral health. Its platform is accessible to more than eight million teens and young adults, providing a welcoming place for support without barriers, waiting lists, or stigma. “We’re excited to partner with DHCS and the State of California to help transform access to digital behavioral health support for youth across the state. Working together, we believe this represents a step-change in providing early and responsive access to behavioral health care to help address the growing youth mental health crisis,” said Kooth CEO Tim Barker.
In partnership with DHCS, Kooth will conduct extensive user-testing to obtain input from youth, families, and key partners about the design, content creation, and functionality of the platform to ensure it meets the needs of California’s youth. These activities will continue prior to and post go-live in January 2024. Also, through partnerships with key partners, such as schools, primary care providers, and behavioral health experts, Kooth will help build awareness and drive adoption of the platform before and after launch."
California bill would reform ‘failing’ system serving adults and kids with disabilities February 22, 2023
"The nonprofit Disability Voices United and pro-bono law firm Public Counsel examined service funding levels at regional centers and and reported last year that people of color, particularly Latinos, receive significantly fewer services than white people. That spending gap, the reports found, has persisted — and even worsened over time — despite recent increases in spending."
Why California still doesn’t mandate dyslexia screening Cal Matters February 8, 2023
"Education experts agree that early screening and intervention is critical for making sure students can read at grade level. But so far, state officials have done almost everything to combat dyslexia except mandate assessments for all students...."
"The California Teachers Association did not respond to requests for comment for this story. In a letter of opposition to a bill in 2021, the union wrote that the bill “is unnecessary, leads to over identifying dyslexia in young students, mandates more testing, and jeopardizes the limited instructional time for students.”"
The Hospitalized Adolescent February 2023
"Adolescents and young adults (AYAs) with developmental disabilities have varying degrees of cognitive abilities; therefore, there are important considerations for these patients in the hospital setting. Although no studies exist on minor patients, a study of adults older than 18 years with intellectual disabilities demonstrated that, for the same admitting diagnoses, patients with intellectual disabilities had statistically significant longer lengths of stay, longer ICU stays, and higher rates of surgical complications.28 Patients with developmental disabilities, in addition to a chronic health condition such as autism spectrum disorder, aggressive behavior, spastic quadriplegia, or respiratory illnesses, and patients admitted through the emergency department were 4 times as likely to have complications.29 It is important to involve individuals with disabilities in their own care to the best extent possible30 to ensure that providers do not minimize patients’ autonomy because of the presence of a disability and tailor participation to their ability....."
"Parents/families of adolescents with disabilities have been encouraged to be “experts on their child.” Caregiver involvement and partnering with them, including education and training to care for the patient’s needs, is crucial, as is optimally involving patients as they are able........"
"Caregivers can provide insight into the adolescent’s developmental stage and familiarize hospital personnel with the individual’s preferences and routines. ....."
"Other challenges in caring for some inpatients who are developmentally delayed or have IDDs include specialized diets, including formulas, and complicated pharmacologic regimens that may include medications and supplements that are not on formulary....."
"Often, these patients require sedation for imaging or other procedures. Providers can inquire about previous experiences with sedation medications, including safety, effectiveness, adverse reactions, and effects on sleep and behavior. It may be difficult to assess when an adolescent with a developmental disability is in pain (and the degree of pain) versus experiencing stress or anxiety from the circumstances, and child life services may be warranted.
The medical literature supports various ways to determine the extent of pain in patients with communication difficulties."
Civil rights groups file lawsuit to block Newsom’s plan for treating people with mental illness LA Times January 26, 2023
"In their filing, representatives from three organizations — Disability Rights California, Western Center on Law and Poverty and the Public Interest Law Project — asked the state’s high court to strike down as unconstitutional the program known as CARE Court (for Community Assistance, Recovery and Empowerment). The groups argue that the sweeping new court system will violate due process and equal protection rights under the state constitution, while “needlessly burdening fundamental rights to privacy, autonomy and liberty.”"
Ed Department Sees Sharp Rise In Disability Discrimination Complaints In Schools January 23, 2023
"The U.S. Department of Education says that complaints of disability discrimination in the nation’s schools are at the highest level in five years.
The agency’s Office for Civil Rights received 6,390 complaints related to disability discrimination during the 2022 fiscal year, a period covering October 2021 through September 2022, according to data provided to Disability Scoop. That’s up from 4,886 similar complaints the year prior and represents the largest number since 2017 when more than 7,200 disability discrimination complaints were filed.
The surge comes as the Education Department logged a record number of civil rights complaints overall. The Office for Civil Rights, which is tasked with investigating discrimination based on race, color, national origin, sex, disability and age in programs funded by the Education Department, said it received 18,804 complaints of all types in 2022, its most ever."
A Case for Inclusion December 23, 2022
"The decision is a resounding vindication for inclusion advocates who feel that too many school districts are not fulfilling the spirit of IDEA’s least restrictive environment principle. As David German told Undivided, “The decision makes clear that district members of the IEP team can no longer rely on a presumption that segregation will be beneficial. Hopefully, requiring district personnel to provide actual evidence of how a student can supposedly benefit from time away from the general education classroom will force them to confront the overwhelming evidence that inclusion works for students.”"
Why are schools submitting kids to this barbaric treatment? Washington Post December 22, 2022
"The use of restraint and seclusion also appears to be discriminatory. According to the Education Department, students with disabilities receiving special education and other services under the Individuals with Disabilities Education Act (IDEA) made up 13 percent of the student population, yet they accounted for 80 percent of the students subjected to physical restraint and 77 percent of those subjected to seclusion.
Each use of restraint and seclusion diminishes the future of any child subjected to it. Put yourself in the child’s shoes: What if you went five days a week to a school that regularly locked you up or physically held you down? Most of us would walk in ready for a fight, not to learn."
Why California is among last states not screening children for dyslexia EdSource December 19, 2022
"The California Teachers Association has been one of the strongest opponents of dyslexia screening, saying children learn to read at their own pace and flagging potential learning disorders could railroad some students, especially English learners, unnecessarily into special education.
Meanwhile, thousands of students continue to struggle with the basics of literacy, falling further and further behind because there is no process to screen every child, dyslexia advocates say."
Fighting for the voiceless: The Death of Franca Panettone November 28, 2022
Franca Panettone was born on November 3, 1973, and died on April 6, 2020
"For Franca Panettone, the quick path to a tragic demise began March 28, 2020, with a fever and cough. Franca was a vibrant, spirited, 46-year-old woman who had a passion for going to church and singing, was close-knit with her family, and was largely nonverbal with Down Syndrome. She also loved the color purple. Franca’s sister Maria, who served as her healthcare surrogate, was with her during the fateful emergency room visit, as Franca was unable to advocate for herself or understand medical terminology."
Remote Services Directive Department of Developmental Services California November 23, 2022
A School District Ignores The Experience Of Parents November 14, 2022
"“I’m not fighting against inclusion. I’m fighting for the proper preparation, and for safeguarding the students who can’t learn in an inclusive environment.”" LAUSD Parent Vicky Maronyan
A Matter of Race and Place Racial and Geographic Disparities Within California’s Regional Centers Serving Adults with Developmental Disabilities October 26, 2022
In California, spending on adults with disabilities differs by ‘race and place’ LA Times October 27, 2022
"Disability Voices United argued that to address the inequities, California lawmakers and the Department of Developmental Services need to step up oversight and accountability for regional centers with big disparities, including reassessing the individual plans for clients at inequitable centers to see if more services should be approved.
It also called for state lawmakers to demand accountability for the money spent to address inequities and target the state grants to geographic areas and groups worst affected by disparities."
COVID-19 Was Leading Killer Of People With Developmental Disabilities September 26, 2022
"“People with IDD are living in congregate settings at a higher percentage than those without an IDD,” Landes said. “Group living situations, especially with close-contact personal care support, is associated with the spread of COVID-19. For the estimated 13% to 20% of adults with IDD living in these settings, the risk cannot be overstated.”
In addition, the study found higher rates of hypothyroidism and seizures in people with all types of developmental disabilities who died in 2020 and obesity was more common among those with intellectual disability and Down syndrome."
How To Protect Special Education During COVID-19: From the Courts to the Capitol University of Miami School of Law 2022
School Expels First Grader for Not Wearing a Mask December 21, 2021
"St. Croix Preparatory Academy, a charter school in Stillwater, Minnesota, expelled a first grader with speech disabilities for repeatedly taking off his mask.
The school board of St. Croix Prep voted unanimously to expel the student, who has an individualized education program (IEP) for delayed speech and other learning problems, on December 2. The child’s parents had petitioned for weeks to overturn the school’s mask mandate in their child’s case, which went into effect on September 7.
Abby and Jake Lee, the student’s parents, provided an exemption to the mask mandate from a licensed medical provider, following Minnesota law, and offered alternatives to the school to keep their son and others safe. The Lees say the school offered no accommodation and suspended the boy four times since September, causing him to miss critical class time."
Research
Autism can be reversed, scientists discover July 20, 2024
"The twins underwent behavioural analysis, speech therapy and a strict gluten-free diet and nutrition programme as part of the trial to reduce inflammation.
The diet was casein-free, a protein found in milk; low-sugar; had no artificial colours or dyes; zero ultra-processed foods; primarily organic; and locally sourced.
The girls were also given daily supplements for omega-3 fatty acids, multivitamins, vitamin D, carnitine, and others."
"Professor Bhismadev Chakrabarti, research director of the Centre for Autism at the University of Reading, who did not take part in the research, said: 'What is exciting about this study is that it opens up the possibility of investigating specific biochemical pathways and their impact on different autistic features.
'It could also provide new ways of detecting autism, if microbial markers turn out to strengthen the ability of genetic and behavioural tests to detect autism."
Multikingdom and functional gut microbiota markers for autism spectrum disorder July 8, 2024
"Collectively, our findings highlight the potential application of multikingdom and functional gut microbiota markers as non-invasive diagnostic tools in ASD."
Human Gut Microbiota from Autism Spectrum Disorder Promote Behavioral Symptoms in Mice May 30, 2019
"While the exciting prospect of genome editing remains on the horizon, development of microbiota-based interventions such as probiotics, fecal microbiota transplantation, or metabolites may offer a timely and tractable approach to addressing the lifelong challenges of ASD."
Litigation and Settlements
Federal Court Issues Historic Order Ending Race-Based Policing by School District July 3, 2024
"On June 28, 2024, Federal Court Judge Jesus Bernal issued a historic permanent injunction in C.B. v. Moreno Valley Unified School District et al., in which he ordered Defendant Moreno Valley Unified School District (MVUSD) to make extensive district-wide changes, as well as reduce its reliance on school police and security officers to respond to students with disabilities. Plaintiff C.B., a Black child with disabilities, filed a lawsuit against the District after, at the age of ten and weighing hardly 70 pounds, he was repeatedly tackled, handcuffed, taken into custody and then referred to law enforcement for exhibiting disability-related behaviors at school. The injunction follows the Court’s October 13, 2023 Order finding MVUSD maintained a discriminatory campus security program that disproportionately removed, restrained, and referred disabled and Black disabled students to law enforcement in violation of federal law."
LAKE WASHINGTON SCHOOL DISTRICT #414, Defendant-Appellee.
"The panel held that the classrooms and other government property at issue in this case must be considered non-public fora, and that the Communication Plan was a reasonable effort to manage a parent’s relentless and unproductive communications with School District staff."
Settlement Agreement Between the United States of America and San Bernardino City Unified School District September 15, 2022
SUPREME COURT OF THE UNITED STATES
LUNA PEREZ v. STURGIS PUBLIC SCHOOLS ET AL. CERTIORARI TO THE UNITED STATES COURT OF APPEALS FOR THE SIXTH CIRCUIT
No. 21–887. Argued January 18, 2023—Decided March 21, 2023
Supreme Court rules for deaf student in education case March 21, 2023
"he Supreme Court ruled unanimously Tuesday for a deaf student who sued his public school system for providing an inadequate education. The case is significant for other disabled students who allege they were failed by school officials."
Supreme Court Seems in Favor of Deaf Student’s Right to Sue School District Under the ADA EdWeek January 18, 2023
"The high court appeal involves two somewhat arcane but important questions in special education law.
The first is whether students and parents must “exhaust” all administrative proceedings under the IDEA before they may sue under a different federal law such as the ADA when the remedy at issue, such as monetary damages, is not available under the IDEA. The second is whether courts may conclude that it would be futile to require going through all administrative proceedings when the IDEA complaint has been settled."
Supreme Court Case Could Change How Special Ed Disputes Are Handled Disability Scoop January 17, 2023
"More than a dozen advocacy groups, professors with expertise in disability law, former Department of Education officials, former members of Congress and the solicitor general have filed amicus briefs supporting Perez.
“Students with disabilities already face inordinate obstacles in getting the education they need to build their future,” said Shira Wakschlag, senior director of legal advocacy and general counsel at The Arc, one of the groups that’s backing Perez. “If the lower court decision is allowed to stand, it will cause further harm to students with disabilities who already experience segregation and discrimination in school and will burden parents by forcing them to jump through futile and unnecessary hoops in order to pursue non-IDEA civil rights claims in federal court.”"
The Supreme Court Will Decide a Significant Special Education Case October 3, 2022
"The case of Perez v. Sturgis Public Schools (No. 21-887) encompasses two questions involving the tangle of legal procedures families and school officials confront in disputes over the two main federal laws protecting children with disabilities. The first is whether the Individuals with Disabilities Education Act requires families who have settled their particular IDEA claims with a school district to “exhaust” all administrative proceedings under the that law before filing a claim under the Americans with Disabilities Act of 1990.
The second is whether a family must exhaust IDEA’s own administrative proceedings when it is pursuing a non-IDEA claim for money damages under the ADA or other federal disability laws."
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