Officials ordered or urged tens of thousands of Orange County residents to evacuate after a leak involving methyl methacrylate at GKN Aerospace. The chemical, used in plastics and resins, is flammable and can cause health effects including breathing problems, nausea, nosebleeds, skin irritation and, in serious cases, hospitalization.

State officials declared an emergency, and about 50,000 people were told to follow evacuation directions. Public agencies announced shelters, care centers and hotlines for residents seeking help.

But disability advocates say those resources do not necessarily amount to a workable evacuation plan for people who cannot simply get into a car, drive away and sleep in a public shelter.

For a bedbound senior who depends on a caregiver, leaving home may require medical transport and continuous personal care. A resident who uses a power wheelchair may not be able to ride in a standard vehicle. Hospice patients, people who rely on oxygen, those needing dialysis, wound care or hospital beds, and residents with complex medical conditions may not be safe in a crowded gymnasium or community shelter.

Kelley Barrett, a retired nonprofit administrator who advocates for people with disabilities, said the Garden Grove incident exposed a persistent gap in emergency planning: public notices often tell residents where to go, but do not clearly explain how people with serious care needs will be identified, contacted, transported and housed safely.

Standard shelters may be suitable for evacuees who can walk, manage their own medication, use public restrooms, tolerate crowds and sleep on a cot. They are far less practical for residents who need caregivers, medical equipment, accessible bathrooms, wheelchair charging, oxygen support or medically appropriate placement.

Advocates are calling for counties to maintain active “access and functional needs” evacuation systems that go beyond written plans or website postings. Such systems, they argue, should include coordination with In-Home Supportive Services, Adult Protective Services, hospice providers, home health agencies, senior housing sites, regional centers and medical baseline programs.

They also say evacuation operations should include accessible transportation, medical transport, caregiver access, medication support, language access and shelters equipped for people with disabilities or significant health needs.

The Garden Grove emergency also has prompted calls for more transparency after major evacuations. Advocates say counties should report how many in-home care recipients, hospice patients, home health patients and oxygen-dependent residents were in evacuation zones; how many lacked transportation; how many were contacted directly; and where medically fragile residents were ultimately taken.

Those destinations could include accessible shelters, medical shelters, hospitals, skilled nursing facilities, hotels or relatives’ homes. Without public reporting, advocates say, it is difficult to know whether vulnerable residents were safely assisted or left to make their own arrangements.

The concerns are not aimed at firefighters, police officers or emergency workers, who often respond under dangerous conditions. Rather, advocates say the issue is whether emergency systems are built to include people who cannot self-evacuate.

California has emphasized aging in place, disability rights and health equity, but emergency planning must reflect those commitments, advocates say. When officials tell the public to leave, they argue, there must also be a clear plan for those who cannot leave without help.

The Garden Grove chemical emergency has therefore become about more than the contents of a leaking tank. It has also become a test of whether disaster planning in Southern California protects residents who are elderly, disabled, homebound or medically fragile.

Original source: CalMatters

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The gap in funding and access to care and crucial services for Black, Indigenous and Latino children with disabilities compared to their white peers has been a longstanding blight on the education and health care system. And that was before the pandemic closed schools.  

“COVID only made things worse. Delivery of services came to a screeching halt,” said Dr. Geeta Grover, director of the UC Irvine Center for Autism and Neurodevelopmental Disorders who cares for children with learning disorders, attention deficit disorder and autism. 

She said without school, the kids lost a multitude of supports, such as therapies for speech and learning, as well as their predictable routine, which can be especially traumatic for kids with autism spectrum disorder (ASD). For example, she described one boy who went to his bus stop every morning for weeks after schools closed. 

“Without robust services, the kids can’t stay on their (learning) trajectory,” said Grover.

More than 3 million children 18 and younger in the United States have a disability, according to 2019 American Community Survey. 

Many of those kids abruptly lost their support system when schools closed, and minority children were harder hit, according to the U.S. Department of Education (DOE). The department and child advocates fear that the disruptions in education and support services for kids with disabilities may cause long-term disparities in their academic achievements, which can shape later-in-life health and well-being. 

For decades, researchers have documented disparities for minority kids with disabilities at every step of their journey, from delayed diagnoses to difficulty in getting appropriate support services. 

Ana Ramos, a Latina mother of two boys with developmental disorders, knows the struggle to get help. Gustavo, 8, finally completed his evaluation for autism in March, though the diagnosis has been suspected since he was a toddler because of delayed speech and unusual behaviors. He didn’t meet criteria for autism, but has an unspecified developmental disorder. Ramos’ 6-year-old, Geraldo, was diagnosed with autism spectrum disorder at 32 months and receives services through school and at the UCI Center.

Asked if her boys are getting what they need at school, Ramos, speaking through an interpreter, said: “To be honest, no.” 

Ramos said Gustavo’s kindergarten school didn’t meet his needs as he was bullied and despite requests, the teacher didn’t arrange for an evaluation, so she moved him to a new school for first grade. That teacher there referred him for developmental testing, but the process stopped when COVID-19 closed schools and only recently resumed. 

Gustavo’s experience is far from unique. 

Many support services, including assessments, psychotherapy, therapy for speech or behavior and many others, are provided in school settings, which meant they suddenly stopped when schools closed. Nearly half of special education services are provided by Medicaid and CHIP, especially for children with greater needs, Additional funds come from other federal, state and local government programs.

COVID-19 also led to a steep drop in kids’ doctor visits. Among children insured with Medicaid and CHIP, 44% fewer had routine checkups, and thus, fewer developmental screenings, in 2020 than in 2019. Missing out on visits and screenings could cause delay in recognizing developmental disorders.

Delayed diagnosis for minority children and non-English speakers has been observed repeatedly. Nationwide, Black and Hispanic/Latino children were diagnosed with ASD and intellectual disabilities on average later than their white peers, according to a 2020 report from the Centers for Disease Control and Prevention. However, for the first time the rate per 1,000 white and Black children diagnosed with autism was similar, though the rate for Hispanic children diagnosed remained lower. 

Delayed diagnosis and early intervention can interfere with children reaching their full potential, and negatively impact the quality of life for the whole family. For example, early intervention can improve the ability to communicate for children with autism. And babies with hearing loss who receive hearing aids before age 6 months have improved communication, language skills and school performance compared to babies who don’t receive hearing aids. 

That’s why the American Academy of Pediatrics recommends universal developmental screening of all children to catch problems as early as possible. Screening can also occur in preschools. However, minority children and those from non-English speaking or low-income families are less likely to have access to routine health care or attend high-quality preschools where such screenings take place. 

Grover said, “Diagnosis is the least of my concerns, but diagnosis opens doors to services and that’s what matters.”

However, even when children of color are diagnosed with a disability, they are less likely to receive as much funding for support services, as their white peers. Less funding translates to fewer services, which in turn can lead to poorer outcomes for the kids. Children from low-income families simply “go without” as their families don’t have the money to pay for specialized services, such as applied behavioral analysis. The treatment can be expensive, though it has proven benefits for behavior and communication skills for children with autism.

For example, in California, children of color with disabilities received less funding than their white peers from regional centers through the state’s Department of Disability Services. On average, Black and Asian children received about 11% less and Hispanic children received as much as 47% less than white children.

The reasons that minority children are diagnosed later (even with similar symptoms) and receive few services are complex and intertwined, according to research based on interviews of providers and parents of children with development disorders. Black and non-English speaking parents reported feeling “undervalued” by professionals, including not having their concerns acknowledged. Other barriers included differences in families’ expectations for their child’s development, lack of culturally informed care, the denial of diagnoses by some ethnic minorities due to the stigma of having a child with autism, lack of accessible resources due to problems with transportation, conflicts with work schedules, or no services available in their community, among other factors.

National data are limited, however. Kaiser Family Foundation reported that COVID-19 led to deepening of disparities in special education services for children with disabilities who are covered by Medicaid and CHIP.

“There’s a national shortage of data,” said Sean Luechtefeld, director of communications for American Network of Community Options and Resources (ANCOR), a trade group that advocates for frontline providers who care for individuals with disabilities.

The lack of funding leads to low reimbursement rates for service workers, exacerbating a persistent workforce shortage in the field. COVID-19 worsened the shortage as some agencies closed and workers could get higher paying jobs elsewhere.

The Case for Inclusion, published by ANCOR and United Cerebral Palsy, reported in 2022 that more than 580,000 individuals of all ages with disabilities were parked on waiting lists for services.

“We can’t clear the waiting lists without an adequate workforce,” said Luechtefeld.

He encouraged journalists to look deeper than the numbers. Quoting a mentor, he said, “When it comes to data, the numbers don’t lie, but they can obscure the truth.” Waiting lists show the numbers of clients without services, but they don’t answer why.

Ramos said agencies should have more staff that speak Spanish and other languages, and the process for children to get evaluations and services shouldn’t take so long.

Despite the difficulties facing families, Ramos remains optimistic for her sons, who are receiving some services, but Gustavo doesn’t yet have a full treatment plan.

Tearfully she said, “I want to share with everyone there is hope, though it has not been easy, (find) all the services available to you. “My sons are now talking. The goal is for them to be as independent as they can be.

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“Everyone deserves the opportunity to live at home, in their communities, and with their loved ones,” said Health & Human Services (HHS) Secretary Xavier Becerra. “This funding will bring dignity and peace of mind to even more seniors and people with disabilities across the country. We will continue expanding these programs to ensure all Americans have equitable access to the high-quality health care they deserve—no matter where they live.” 

“Our health care system works best when it meets us where we are and helps us get to where we want to be,” said CMS Administrator Chiquita Brooks-LaSure. “With this new funding opportunity, we’re expanding a program with a proven track record of helping seniors and people with disabilities transition safely from institutional care to their own homes and communities. Letting ‘money follow the person’ is key to those successes, and to the Biden-Harris Administration’s commitment to affordable, accessible, person-centered care.” 

HCBS is a critical component of the Medicaid program and the Biden-Harris Administration’s commitment to help older adults and individuals with disabilities live safely and independently in their homes and communities. The MFP program has been a critical tool, now with the potential to do more in a broader array of states and territories thanks to this latest NOFO. 

To help additional states and territories implement MFP, these awards will support the early planning phase to get an MFP program off the ground. This includes:

• Establishing partnerships with community stakeholders, including those representing diverse and underserved populations, Tribal entities and governments, key state and local agencies (such as state and local public housing authorities), and community-based organizations;
• Conducting system assessments to better understand how HCBS support local residents;
• Developing programs for the types of community transitions MFP supports;
• Establishing or enhancing Medicaid HCBS quality improvement programs;
• Recruiting HCBS providers as well as expert providers for transition coordination and technical assistance; and
• Conducting a range of planning activities deemed necessary by the award recipients and approved by CMS.

State Medicaid agencies not currently participating in the MFP demonstration may apply through the NOFO no later than May 31, 2022. To access the NOFO, visit Grants.gov or here https://www.grants.gov/web/grants/view-opportunity.html?oppId=334196

For states already participating in MFP, CMS also announced that the agency is increasing the reimbursement rate for MFP “supplemental services.” These services will now be 100% federally funded with no state share. Further, CMS is expanding the definition of supplemental services to include additional services that can support an individual’s transition from an institution to the community, including short-term housing and food assistance. These changes will help further address critical barriers to community living for eligible individuals, as well as increase community transition rates and the effectiveness of the MFP demonstration overall. For more information on current and previous grantees, visit Medicaid.gov. CMS will provide additional information on these changes to MFP grantees.

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CHILDREN WITH COGNITIVE OR LEARNING DISABILITIES OR MENTAL HEALTH CONDITIONS, AND CHILDREN WITH DISABILITIES FROM LOWER INCOME SETTINGS, ARE ESPECIALLY LIKELY TO EXPERIENCE VIOLENCE

Children and adolescents with disabilities experience physical, sexual, and emotional violence, and neglect at considerably higher rates than those without disability, despite advances in awareness and policy in recent years. This is according to a systematic review of research involving more than 16 million young people from 25 countries conducted between 1990 and 2020. The study provides the most comprehensive picture of the violence experienced by children with disabilities around the world. The findings are published in The Lancet Child & Adolescent Health.

Young people with mental illness and cognitive or learning disabilities (e.g., attention deficit hyperactivity disorder and autism) are especially likely to experience violence, and overall, children with disabilities are more than twice as likely to experience violence compared to those without disabilities, which can have a serious and long-lasting impact on their health and wellbeing. The findings highlight the urgent need for collaborative efforts by governments, health and social workers, and researchers to raise awareness of all forms of violence against children with disabilities and to strengthen prevention.

“Children with disabilities face unacceptably high levels of violence worldwide,” says Ilan Cerna-Turoff in the Department of Environmental Health Sciences at Columbia University Mailman School of Public Health, who co-led the study. “Governments face a challenging time in which resources are spread thin in responding to the COVID-19 pandemic and economic and social change. We know that violence prevention leads to better development indicators for our societies. Now, more than ever, violence prevention is a worthy and important investment to secure a better future. Moreover, all people deserve the right to live in a world in which they are safe from violence. Protecting children with disabilities from violence is a fundamental aspect of social justice and equity.”

An estimated 291 million children and adolescents have epilepsy, intellectual disability, vision impairment, or hearing loss—representing about 11 percent of the total child and adolescent population globally. Many more have other physical and mental disabilities. The vast majority of children with disabilities—more than 94 percent—live in low-middle-income countries (LMICs) where multiple risks converge. Inadequate systems of social protection and access to support, stigma, discrimination, and a lack of information about disability contribute to the higher levels of violence experienced by children with disabilities. This situation can be further exacerbated by poverty and social isolation. The unique challenges faced by children with disabilities, such as the inability to verbalize or defend themselves, can also make them a target of violence.

In 2012, a systematic review published in The Lancet estimated that more than a quarter of children with disabilities in high-income countries experienced violence and that their odds of experiencing violence were more than three times higher than their non-disabled peers.

This new analysis includes a larger number of studies from a wider geographical area, more types of violence (e.g. peer bullying, intimate partner violence), and a wider range of disabilities (physical limitations, mental disorders, cognitive or learning disabilities, sensory impairments, chronic diseases), as well as using updated methods. It provides current global estimates of violence against children with disabilities up to September 2020. 

The researchers performed a systematic review and meta-analysis of all observational studies measuring violence against children with disabilities published in 18 English-language databases and three regional Chinese databases between 1990 and 2020. They analyzed data from 98 studies involving over 16.8 million children (aged 0-18 years), including 75 studies from high-income countries and 23 studies from seven low-income and middle-income countries.

Analysis of data from 92 studies looking at prevalence found that the overall rates of violence varied by disability and were slightly higher among children with mental disorders (34 percent) and cognitive or learning disabilities (33 percent) than for children with sensory impairments (27 percent), physical or mobility limitations (26 percent), and chronic diseases (21 percent).

The most commonly reported types of violence were emotional and physical, experienced by about one in three children and adolescents with disabilities. The estimates suggest that one in five children with disabilities experience neglect, and one in ten have experienced sexual violence.

The study also draws attention to high levels of peer bullying, with almost 40 percent of children with disabilities estimated to have experienced bullying by their peers. In-person bullying (physical, verbal, or relational acts, such as hitting and kicking; insults and threats; or social exclusion) is more common (37 percent) than cyberbullying (23 percent).

In general, children with disabilities living in low-income countries experienced higher rates of violence than those in high-income countries—possibly as a result of limited access to prevention and support services, lower levels of legal protection, and attitudes and norms that stigmatize people with disabilities and lead to greater social tolerance for violence. A further challenge is that we continue to face gaps in information on low-income and middle-income countries, especially in Southeast and Central Asia and Eastern Europe.

“Violence against children with disabilities is preventable. These children must be given the right life chances now,” said co-lead author Zuyi Fang from Beijing Normal University in China. “The UN Sustainable Development Goals aim to end all forms of violence against children by 2030. Achieving this will require political leaders, practitioners, and researchers to work together to implement what we already know works to prevent violence such as evidence-based parenting interventions while developing and evaluating effective community, school-based, and online interventions that target specific forms of violence.”

Writing in a linked commentary, Tania King from the University of Melbourne in Australia, who was not involved in the study, notes that it is possible that there has been an escalation in rates of violence against children with disability since the COVID-19 pandemic, adding that, “Article 19 of the United Nations Convention on the Rights of the Child, endorsed by many countries around the world, enshrines the rights of children to be protected from violence. As the number of children with disability continues to grow worldwide, we must establish the systems and processes to protect them from violence. Better services and support for children with disability will reduce many of the risk factors that underpin their increased experiences of violence. The imperatives to act are many: they are economic, as the damage wrought by violence is costly. The imperatives are social – society has much to gain by improving inclusion of those with disability. But importantly the imperatives are moral—it is unacceptable for current society to tolerate such rates of violence among children with disability.”

Other co-authors of the study are from the University of Oxford, and the University of Leeds, UK

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