Cheery, yes? And true.

By Anne Dachel

I’m starting to see stories in the news that are a preview of how everything will eventually collapse. This is inevitable.  We can’t have this level of disability among our kids everywhere and not have the cost eventually bankrupt us.

Loss of Brain Trust is about what’s happening in our schools. You can’t have tens of thousands of kids on waitlists for ASD diagnoses, you can’t be building whole schools for autistic students, you can’t have counties in England going into huge deficit spending because of the cost of special education, and you can’t have autism rates at 5 percent of students (like in CA, NI, and Ireland) and not have it permanently change society.

I have long said that it won’t be until the COST OF AUTISM buries us that we’ll finally honestly address the CAUSE OF AUTISM.

Imagine what will happen  in the next few years as more and more and more disabled kids leave school with no place to go. Imagine what will happen as aging parents can no longer care for these adult children.

In 2014 the U.K. officially extended special education to age 25. I’m guessing that was done because there is simply nothing for all these disabled young adults after leaving school. It was Britain’s attempt to kick can down the road.

While I’m mostly focused on EDUCATION on Loss of Brain Trust, I can’t help but notice the stories about ADULT SERVICES and that growing crisis. THIS IS WHAT WILL COLLAPSE THE HOUSE OF LIES ABOUT AUTISM.

We’ve bought into the REALLY BIG LIE ABOUT AUTISM—that there has always been autism everywhere like we see in our children, we just didn’t notice, or we just called it something else.

It’s the perpetual official explanation every time the rate leaps upward.

Of course if that were true, we would have experience dealing with autism. We’ve had IDEA for almost 50 years now, so we would have had these kids in school, even if we didn’t call their disability AUTISM.

QUESTION: If autism has always been here, why do we have to train health care staff, EMTs, police, fire fighters, and teachers etc. to deal with autism?

That question is not allowed.

BUT what can’t be avoided is the coming cost of ADULT CARE. Right now, parents have to shoulder the burden of cost and care for all these autistic children. Right now, autism coverage is mostly about school age children.

ADD on to that the cost of adult services and care. I’m starting to look for these stories as well.

There was a sobering story on July 10^th from Longmont, Colorado about a 13 year old with severe autism

CBS Colorado News: Dad abandons son with autism at Longmont hospital and human service workers refuse to take custody

A 13-year-old boy with Autism has been forced to live at UCHealth Longs Peak Hospital in Longmont for three weeks after his dad abandoned him and human service workers told hospital employees it would take months to secure placement for the boy due to a lack of resources….

Madlynn Ruble with the Colorado Department of Human Services said while the state is working to increase residential treatment, it lacks options for children with highly complex medical and behavioral health needs, due in part to a lack of providers.

When I saw the Colorado story, I immediately remembered something similar from Canada that I wrote about ten years ago.

May 3, 2013, Age of Autism Heartbreaking Story: Adult Son with Autism Left to State

It was a story about parents who turned their autistic son, who functioned on the level of a two year old, over to social services because they could no longer care for him.

IF autism has always been here, why aren’t there places for these disabled adults? Why do parents have to drop their children off?

WHY can’t young autistic adults go where autistic adults have always gone?

WHAT does that tell us about autism?

Here’s further proof that society is not prepared for the tsunami of autism that’s coming.

In Sherbrooke, Quebec, they’ve opening a home for autistic adults who have “lighter needs” and don’t require 24/7 care.

On July 5, 2023, in the U.K., a report was published about changes that have to happen in order to care for autistic adults.

On 5 July, a new report called Supported housing for people with learning disabilities and autistic people in England – commissioned from Housing LIN by the Learning Disability and Autism Housing Network, a coalition of more than 20 housing associations – was published with the aim of providing data, information and insight about supported housing for people with learning disabilities and autistic people.

The research provides a comprehensive evidence base of the scale, scope, cost and future need of supported housing. The report sets out clear recommendations that the network firmly believes will help address many of these issues. …

More funding needed

“Our call to government is to support new provision by increasing the level of capital funding and reforming the outdated rent standard that has stifled new public funded provision”

Over 80% of the supported housing provision in this sector is provided by housing associations.

The majority of tenants living in supported housing have significant support needs, with over 43% of people receiving over 100 hours a week of care and support.

Over 83% of supported housing tenants require higher levels of ‘specified’ housing benefit and over 58% live in specialised supported housing – which is exempt from the Rent Standard – where there are high levels of care and support and limited or no public capital subsidy.

Demand exceeding supply

Housing LIN estimate that more than 1,800 additional homes are needed each year over the next 15 years – that’s 27,000 individuals – which will require over £340m [$438M] per year of private and public funding. It is clear that even with increased grant funding, the sector requires significant input from private finance and needs to develop a model that supports new provision with private finance that is sustainable, reasonable and provides good-quality, secure housing for people.

The reality is that demand from individuals, their families and commissioners is exceeding supply and if we are going to respond to this need with quality housing and viable funding, things need to significantly change. Our call to government is to support new provision by increasing the level of capital funding and reforming the outdated Rent Standard that has stifled new public funded provision.

Also on July 10, 2023, there was a similar story about the need for adult care.

The Guardian: ‘We were inundated’: creating pioneering homes for autistic young adults

With growing numbers of parents increasingly unable to find suitable, safe and secure residential accommodation for their young adult children – and cash-strapped councils having to pay exorbitant costs when already expensive placements break down – the two are coming together to forge a solution. …

Another parent who is also working on a proposal for their council, who asked not to be named, said: “The current situation [in my area] is unbelievably bad for profoundly autistic adults. We’ve got no choice but to create something ourselves.

"There is no money available and everyone we speak to tells of atrocities of autistic folk being placed in unsuitable settings which then break down and end up costing millions in psychiatric care – plus all the trauma associated with that. We’re not prepared to let our child go down that route,” they added.

Fraser Hardie, the chair of the Autism Centre of Excellence in Cambridge, said: “There is a crisis playing out in this country if you’re autistic. In my county, there are between 30 to 50 children who will need this care in the next five years – and literally nothing for them.”

In 2021 the Health Foundation estimated that turning around the crisis in adult social care would cost at least £7.6bn [$9.8B] in 2022 to 2023, and £9bn [$12B] in 2024 to 2025. …

“This is an area which is generating very significant financial pressure for both adults and children’s social care services. The growing volume of children and young people with complex needs is outstripping the ability to commission arrangements.”

There’s more

July 10, 2023, (UK) THIS: LDA Network reveals need for over £300m [$386M] a year to be invested in supported housing in England https://thiis.co.uk/lda-network-reveals-need-for-over-300m-a-year-to-be-invested-in-supported-housing-in-england/

New research by the Learning Disability and Autism (LDA) Housing Network has called for £304m [$391M] of private and public funding each year, over the next 15 years, to deliver the increasing demand in supported housing for people with learning disabilities and autistic people.

July 11, 2023, Learning Disability Today: New research predicts massive shortage of supported housing

New research on the future needs of supported housing for people with a learning disability shows that there will be a shortfall of between 27,000 to 34,500 by 2037.

The report, Supported housing for people with learning disabilities and autistic people in England, was launched by Learning Disability and Autism Housing Network and Housing LIN….

Ian Copeman, Business Director at Housing LIN, said: “We are delighted to have worked with the LDAHN to undertake this research into the scale, scope and cost of supported housing for people with learning disabilities and autistic people. We regularly work with local authorities, NHS organisations and housing providers to widen the housing options available to people with learning disabilities and autistic people. We look forward to the work of the LDAHN and their partners leading to more people having their own home.”...

April 21, 2023, Los Angeles, Spectrum News: Apartment complex for neurodiverse individuals breaks ground in LA

BEVERLYWOOD, Calif. — It’s a question that haunts many parents of children with intellectual disabilities: Where will they live after I’m gone?

A new housing development in the center of Los Angeles will soon provide an answer with the nation’s first residential complex for people with autism, ADHD and other neurodiversities.

 “Unfortunately for this growing population, after high school there are often limited options for learning, employment and housing,” said Eric Schwartz, father of an adult son with an intellectual disability and board member of the charitable nonprofit Cornerstone Housing, which is developing The Village apartment complex in Beverlywood….

According to the California Department of Developmental Services, 75% of adults with developmental disabilities live with aging family members or caregivers. About 70,000 teens with autism turn 18 each year, according to the Autism Institute at Drexel University, but once they become adults, they are often unable to find well-paying jobs and support themselves.

The idea behind the Village is to create “a nurturing neighborhood where kindred spirits can encourage, comfort and support one another, make lasting friendships, become independent, empowered and confident,” Schwartz said. “A place where support is readily available. A place where size and scale allow services to be delivered effectively and efficiently.”

In the works for over 20 years, the Village will have 64 apartments when construction is complete, as well as 10,000 square feet of retail on the ground floor. Individuals who live in the building will receive skills training and job placement opportunities and be provided with meals, activity rooms, exercise classes and transit access in a building that is staffed 24 hours a day with security. …

March 2, 2023, CBS New York: Westchester County convent to be converted into housing for adults on the autism spectrum

TUCKAHOE, N.Y. -- A much-needed home for adults who are on the autism spectrum is in the works in Westchester County.

State numbers show the number of people diagnosed is increasing every year.

Government services usually end by the age of 21, and this is one model that could help ease the transition to adulthood.

Kristin Thatcher was smiling from ear-to-ear as she talked about her Staten Island apartment, part of a former convent building that was converted a few years ago for adults on the autism spectrum.

She says she told Cardinal Dolan she doesn't belong in a group home and that she needed her own independent living space when she comes home from work….

"Right now in New York state, there is a tsunami of adults with autism who need housing. They are on waiting lists, isolated and afraid as their parents age and their future is uncertain," said Donna Maxon with ArchCare.

ArchCare, the health care system of the Archdiocese of New York, this week announced it's transforming another convent -- the one at Immaculate Conception Church in Tuckahoe. There will be nine living units, each equipped with a kitchen and bathroom. Applications must be mailed by March 31….

The building is expected to open in 2024.

Members of the media blather on and on about autism awareness, acceptance, and now more and more about NEURODIVERSITY and INCLUSION, all the while pretending that vast numbers of autistic children are nothing new. But in the real world the clock is ticking.

In 2023 the CDC study released their first ever study on profound autism.

The report found that the percentage of 8-year-old children with profound autism among those with autism was 26.7 percent. 

This is the future. The massive cost of special education is nothing when compared to the never-ending price tag for lifetime care for autistic adults. Coming up with housing for high functioning autistic adults who do well with minimal support may make everyone feel proactive and caring, but it’s not reality. There are many thousands of autistic Americans who will live long lives totally dependent on social services and ultimately the taxpayers.

The pretense that all this is nothing new is simply a myth. If we don’t stop the lie, we have no  future.

Anne Dachel Is Media Editor for Age of Autism.

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