World Kindness Day is an international holiday that was formed in 1998, to promote kindness throughout the world and is observed annually on November 13 as part of the World Kindness Movement. It is observed in many countries including the United States, Canada, Japan, Australia and the U.A.E.

World Kindness Day presents us with the opportunity to reflect upon one of the most important and unifying human principles. On a day devoted to the positive potential of both large and small acts of kindness, try to promote and diffuse this crucial quality that brings people of every kind together.

Last notice for:

via Zoom

VOR advocates for a full continuum of care for all individuals with disabilities. We believe that one size doesn’t fit all. Many of our members have loved ones with severe or profound disabilities- often with medical or behavioral issues- a population that is so often ignored.

After a brief introduction by one of our board members on some of VOR’s initiatives, we would like to hear from you. What is going on in your state? How are the needs of your loved ones being met (or not)? What changes would you like to see that would benefit your family member? How are you advocating for your family? And any other comments that you feel are relevant.

We’re hoping for an informal, relaxed conversation. We’re all in this together!

Please RSVP to [email protected] to receive a Zoom invitation.

By Amy S. F. Lutz, Psychology Today, November 8, 2021

The logic that drives much contemporary policy for the intellectually and developmentally disabled continues to baffle me. I’ve written before about one persistent refrain in these debates – I don’t want X, so no one should have X – but now I’d like to address a different assumption that, at the risk of dating myself, I’m going to call the “Reverse Field of Dreams Fallacy”: If we don’t build it, they won’t come.

I’m seeing this more and more recently. Many disability advocates argue that we should completely get rid of – and you can fill in the blank here, guardianship/special ed classrooms/sheltered workshops/Intermediate Care Facilities and all larger residential settings – based on the assertion that nobody really needs such intensive supports. Instead, these advocates offer the vision of even the most profoundly intellectually and developmentally disabled children flourishing in inclusive classrooms and adults thriving in their apartments, holding competitive, minimum-wage jobs, and exercising their autonomy with a little guidance from friends or family members through supported decision making.

It’s a lovely vision – I completely understand why so many policymakers are listening. Who doesn’t wish that for everyone? If only wishing made it so.

However, the truth is that intensive, disability-specific supports exist because they are desperately needed – particularly by those with the dangerous behaviors that are often associated with severe autism.

Last week, The Philadelphia Inquirer featured a story about 12-year-old Emmett Tolis, a severely autistic boy who has been languishing at the world-renowned Children’s Hospital of Philadelphia (CHOP) since July because of aggressive behaviors that are not only too unsafe to manage at home, but, ironically, preclude his acceptance by providers who, with limited resources and huge waiting lists to draw from, are heavily incentivized to choose the easiest clients. (Note: See article below in State News)

The lack of appropriate services for Emmett is no accident. Still, it is the completely foreseeable consequence of policies issued by the Office of Developmental Programs (ODP) in Pennsylvania, where I also live. ODP has fought hard (and is still fighting) to close our state developmental centers, sheltered workshops, and virtually all intensive, disability-specific settings. The agency “is now phasing out ‘Day Habilitation Programs’ and replacing them with Community Participation Supports,” regardless of whether it is safe for participants with aggression and self-injury to spend most or all of their days in public spaces, or whether such unstructured, over-stimulating environments might even exacerbate those behaviors.

Housing regulations similarly mandate that new residential settings be “integrated and dispersed in the community in noncontiguous locations” and “may not exceed a program capacity of four,” even if larger settings might better support the diverse staffing needs (including, potentially, direct support professionals, behavior specialists, occupational therapists, nurses, etc.) of the most severely impaired.

Keep in mind these limits are not mandated by the Centers for Medicare and Medicaid Services (CMS), which has explicitly called for an individualized and outcome-oriented approach to service provision.

But states are permitted to be more restrictive than required by the federal government; ODP is exercising that right; and families like the Tolis’ are left with no option besides trying to manage extraordinarily dangerous behavior at home – which is what they will be doing going forward, as CHOP decided to discharge Emmett with no explanation and no plan.

Suppose you’re skeptical about how violent an autistic child can be. In that case, the Inquirer article also included the heartbreaking story of Zoe Potack, an eleven-year-old whose self-injurious behavior is so intense that she has permanently blinded herself.

Importantly, these are not isolated cases. Last month, a consortium of organizations, including the National Council on Severe Autism (of which I’m a board member) and the Autism Science Foundation, released a short video with the express purpose of showing those who have never experienced it what extremely aggressive and self-injurious behavior in autistic kids and young adults look like. I think it should be required viewing for everyone involved in crafting policy for this population.

This is not just a Pennsylvania problem. In 2017, Kaiser Health News reported that an increasing number of autistic youths were “spending weeks or even months in emergency rooms and acute-care hospitals, sometimes sedated, restrained to mesh-tented beds” because of a lack of appropriate services. Between 2009 and 2014, the number of autistic individuals seen in hospital ERs almost doubled, reaching nearly 160,000, with the most prolonged stays clocking in at nearly a year.

It’s also not just an autism problem. As has been well documented, the closure of psychiatric hospitals and the exclusive focus on community-based mental health care has resulted in a phenomenon known as psychiatric “boarding,” where patients with severe mental illness are forced to wait for days in ERs because of a lack of inpatient beds. More broadly, deinstitutionalization has resulted in dramatically increased rates of homelessness and incarceration.

By Amanda Calhoun, Time Magazine, November 8, 2021

A recent study showed that adults with autism spectrum disorder, intellectual disability, and other mental illnesses are at higher risk of contracting COVID-19 and having more severe cases of the virus. Based on my brother’s experience, I know one reason why: ableism.

“He needs sedation!” Mom explained to the medical team. “He is not going to tolerate you placing an IV. He may hurt someone!”

My brother has limited verbal ability, so Mom spoke for him. The medical team tried to place the intravenous line anyway. My brother immediately began defending himself, hitting a nurse and scratching the physician. A medical tech walked by the hospital room, his beady blue eyes landing on my chestnut-skinned brother with a sneer. The medical tech did not see a struggling man with autism spectrum disorder—my brother—he saw a problem. “You need any help, doc?” asked the medical tech poking his head through the doorway. “No, we’re okay here,” the doctor responded. My brother froze mid-struggle. His deep brown eyes rested on the blue eyes of the medical tech. “Help, please,” my brother said clearly.

When patients with autism access the medical system, it often fails them, as it does my brother. Physicians fail to give them the support they need to feel safe, and staff fail to give them the compassion they deserve. When I became a doctor, I watched colleagues sigh when a patient with autism was admitted. “Ugh, this is going to be a lot of work.” “Yes,” I replied, frowning at my colleague. “Yes, it is.” 2.2 % of adults currently have autism spectrum disorder. 1 in 3 people with autism have a severe form—and are minimally verbal—yet severe forms of autism have been understudied. Adults with severe autism are even less studied, as the majority of research studies focus on children and adolescents with autism, leaving adults out of the picture. Patients with autism are more likely to have other medical and psychiatric illnesses, some of which could be averted or attenuated, with preventative care. Yet, they are less likely to receive routine healthcare from vaccinations to dental care, and their use of medical services declines as they transition into adulthood. Sadly, most healthcare providers are largely unprepared and untrained to treat patients with autism, leading to poor outcomes.

Even before the pandemic, my brother struggled to receive decent medical care. Once COVID-19 came, the medical system did not treat him any better. When the vaccine was rolled out, he was excluded even as I watched my parents (a physician and a pharmacist) relentlessly advocate for him to receive it. As his guardians, they make medical decisions for my brother because he does not have the ability to make choices for himself. Vaccine clinics turned my brother away because he would require sedation or a physical hold to tolerate a needle being stuck in his arm. His dentist, who routinely sedates him for his annual teeth cleaning and medical labs, did not know how to gain access to the vaccine. His primary care physician dropped the ball too, not even bothering to coordinate my brother getting the shot. I checked autism advocacy websites, full of helpful documents promoting vaccination in individuals with autism. There were no resources for individuals with autism who were denied the vaccine. I left voicemail messages for autism advocates, but never heard back.

Plenty of reporting has been done about the profile of the unvaccinated. But, the missing pieces of the story are the many unvaccinated individuals who have severe forms of autism spectrum disorder, intellectual disability, or other mental illnesses.

To be sure, vaccinating adults with severe autism and other mental health disorders, would require additional staff, either to physically hold the patient or to ensure that they have no adverse reactions to sedation. And if the moral weight of discrimination due to disability does not sway you, then let’s look at the costs and benefits. If these individuals are not given special accommodations, and are denied the vaccine, they are 29 times more likely to be hospitalized if they contract COVID-19, adding to the billions of dollars in healthcare cost and burden on medical staff.

Primary care physicians should be spearheading this care coordination, no doubt, and the burden should not fall on emergency department physicians and staff. Additionally, the federal government should give additional funds to federally qualified health centers, enabling them to provide special accommodations for disabled individuals to receive the COVID-19 vaccine. The federal government could also provide additional funding to emergency departments, so they can get the staffing and support needed to administer the vaccine safely to disabled patients. Either way, the clock is ticking for individuals like my brother, and I hope that the medical system steps up to the plate soon. My brother is still not vaccinated, and he deserves to be.

News Tribune, November 9, 2021

Elks Lodges are improving smiles for people with developmental disabilities in Central Missouri. The Elks Mobile Dental Unit began offering free dental care for qualified clients Monday at the Jefferson City Elks Lodge 513 at 901 Ellis Blvd.

Elks have reached out to sheltered workshops, such as Capital Projects in Jefferson City and Gateway Industries in Eldon, and informed them of the unit's availability, said Cindy Smith, a dental assistant on the vehicle.

Smith has been setting up appointments for this week. She can be reached at 573-690-6003.

Appointments are available Monday through Thursday. Hours depend on services needed.

Staff offer cleanings, X-rays, fillings and selective extractions in the mobile treatment room. The vehicle includes a wheelchair lift, which makes it accessible.

In addition to people with developmental disabilities, Elks will accept clients who are in extreme financial distress who have found it impossible to receive dental care anywhere else. These individuals should be given a letter of referral from the lodge.

Individuals who are to receive treatment will be screened for eligibility and ability to receive treatment in a mobile clinic with the aid of local anesthesia, when needed.

By Tara Disanayaka, Badger Herald, November 11, 2021

Anita Bhattacharyya, a professor of cell and regenerative biology at the University of Wisconsin, is doing innovative research to understand how changes to brain development in the womb lead to intellectual disability in people with Down syndrome at the UW Waisman Center.

This approach aims to shed light on how brain development in individuals with Down syndrome differs from typically developing individuals and find potential targets for therapy.

Down syndrome is a genetic disorder that occurs when abnormal cell division causes an extra chromosome to be added to chromosome 21, also known as Trisomy 21. Though the genetic cause of Down syndrome and its related phenotypic effects are well studied, there are some gaps in the understanding of how prenatal brain development of Down syndrome differs from those who do not have the disorder.

The researchers received an $11 million Transformative Research Grant from the National Institutes of Health, also known as NIH. This grant is awarded to research that the NIH believes is highly innovative and is likely to have a large impact on the biomedical and behavioral fields.

The main method of studying the disorder currently uses animal models which do not accurately represent how the disorder presents in humans. Bhattacharyya and her collaborators are developing a new technique of modeling the prenatal Down syndrome brain based on human-induced pluripotent stem cells, also called iPSCs.

According to the NIH, since scientists are unable to manipulate human development like they can with model animal organisms due to ethical reasons, much of the information about development has been extrapolated from model organism experiments and studies. While these models have been essential in studying development, iPSCs offer a new way to study embryonic development by using human cells instead of model organisms.

Human induced pluripotent cells start as either adult skin or as blood cells that can then be reprogrammed to become almost any other cell type. Bhattacharyya and her colleagues are using iPSCs from adults with Down syndrome and reprogramming them into neuron cells — cells located in the brain, specifically the prefrontal cortex — to study how Down syndrome neuronal developmental pathways diverge from the neurotypical pathway.

“Although Down syndrome is quite prevalent and we know a lot about individuals with Down syndrome … what we don’t have a good understanding of is how brain development in Down syndrome is different,” Bhattacharyya said.

Reminder:

AP NEWS, November 11, 2021

Two privately run group homes for the severely mentally ill in Rhode Island are closing at least temporarily and the residents are being moved to another facility in response to a severe staffing shortage, officials say.

Twenty-one residents from the Singleton House in Burrillville and the Chicoine House in Cumberland were being moved Wednesday to a temporary home in a closed state property in Smithfield, The Providence Journal reported. (* See below)

“There is a public health emergency and a staffing shortage, and even staffing agencies cannot meet all the staffing needs,” said Randal Edgar, a spokesperson for the state Department of Behavioral Healthcare, Development Disabilities and Hospitals, the agency that oversees and pays for the group homes. “In this case, the provider is moving clients from two smaller facilities into this larger facility because it will allow the provider to pool staff.″

By Jennifer Corr, Dan's Papers, November 6, 2021

Advocates for people with disabilities have been sounding the alarm for months that East End group homes are in crisis amid staff shortages, but the problem is not going away, experts warn.

Fueling the fire are New York State budget cuts that have limited raises offered by nonprofit agencies that run group homes, and the ongoing coronavirus pandemic, which prompted funding declines and staff shortages across an array of industries.

“The problem you have now, with all these mandates and cuts, 80% of our budget is salaries,” said Charles Evdos, the executive director of the agency Rise Life Services, based in Riverhead. “The problem is, we want to raise the direct care workers to $20 an hour. The state doesn’t give us the money to do that. Basically, agencies on Long Island are paying anywhere from $14.50 to maybe $16. Agencies can’t afford to pay the $20 an hour.”

Nearly 25% of direct support professionals — staffers who work with people with disabilities both in group homes and other settings — positions are vacant across New York State, according to a recent statewide survey conducted by The New York Disability Advocates. The survey found that nearly 70% of agencies reported senior staff had to cover shifts due to staffing shortages and nearly half had to close programs or reduce operations due to staffing shortages.

Evdos blamed the state funding cuts for impeding such agencies’ missions to provide a good quality of life, full of activities and socialization, for group home residents. The budget cuts — 16.2% in 2020 and 23% in 2021, followed by a decade without cost of living adjustments (COLA) — make it difficult to maintain and incentivize staff, Evdos said.

“The current staffing crisis has also resulted in East End Disability Associates operating its programs at minimum capacity, deploying senior staff to cover direct support professional shifts, postponing planned development and discontinuing some programs that we have provided to families since 1993,” said Lisa Meyer Fertal, the chief executive officer of East End Disability Associates, in a letter sent to family, friends and business associates. East End Disability Associates operates seven group homes across the Twin Forks.

And it does not help that budget cuts, along with the lack of COLA, are not taken into consideration by the state as it continues to implement mandates such as requirements for filling positions or having a certain amount of staff to watch residents of the group homes.

What happens, Evdos added, is that staff members realize they can work a job at Lowe’s Home Improvement or McDonald’s for an easier job that will get them more money. The New York Disability Advocates survey also found a 93.16% decrease in job applications.

By Larry Thayer, Cape Cod Times via Yahoo News, November 7, 2021

Asad Jung’s recent article (Oct. 27) on apartments in Dennis for people with autism highlighted the critical lack of staffing for adults with disabilities on the Cape.

This is a crisis, and inadequate compensation needs to be addressed now.

Many Cape programs serving adults with autism, traumatic brain injury, cerebral palsy, blindness and other intellectual and developmental disorders lost up to 40% of their direct-care staff during the pandemic. They cannot hire new staff due to low pay rates set by the state. Our programs simply cannot compete with higher salaries offered by employers such as local supermarkets, hotels and restaurants.

The crisis is worse here due to the higher cost of housing, lack of affordable housing, higher food costs and the need to maintain a vehicle due to inadequate public transportation on the Cape.

Each day that people with disabilities lack adequate staffing, their health and safety are at risk.

Employees are required to obtain and maintain certifications in first aid, CPR, medication administration and non-violent restraints, and to exercise independent and compassionate judgment. They are professionals who individuals and their families rely on for their safety, health and well-being. Programs have been unable to operate at full capacity, jeopardizing safety and leaving individuals needing and deserving services without them.

How many parents have been unable to return to work in order to stay home to take care of a family member with a disability? Many Cape Codders have been out of programs for over a year.

Let us urge our legislators and Governor Baker to raise salaries and benefits for the heroic men and women who care for people with disabilities. Paying them a living wage, commensurate with their skills and training, is key. People with disabilities and their families need our support now more than ever.

Including language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services in the Build Back Better Reconciliation Act (H.R. 5376)

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

VOR OPPOSES:

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

Contact us at [email protected]

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