Prevention of Drowning

The Politics of Autism discusses the dangers facing autistic people, including wandering and drowning.

From the Massachusetts Office of the Child Advocate:

Ahead of the 4th of July weekend, the Office of the Child Advocate (OCA) and the Massachusetts Department of Developmental Services (DDS) are expanding their Autism, Wandering & Water Safety awareness campaign focused on drowning prevention and emergency preparation for children with autism. The safety campaign includes a dedicated webpage mass.gov/AutismWaterSafety, with tools and strategies to help prevent these deaths.

The campaign includes videos in English and Spanish featuring a local mother whose child is autistic and has in the past wandered away, with information about tools to help caregivers keep their children safe.

 Jonaki Mehta and Janet W. Lee at NPR:

Kids with autism are 160 times more likely than other children to die from drowning, according to a seminal 2017 study from Columbia University. In fact, in Florida, most children drown in backyard pools. That's largely because about half of autistic children have a tendency to wander from safe settings. That fact, combined with an attraction to water can make for a dangerous combination. Quality swim lessons can help.

That's one of the reasons Mackenzie's parents enrolled her in Swim Buddies, the YMCA of South Florida's low-cost program aimed at children with disabilities. It's also why the state of Florida, which has one of the highest childhood drowning rates in the nation, is expanding a voucher program on July 1 that will put children ages 1-7 who have autism at the front of the line for subsidized swim lessons. "We have tragic circumstances and stories across the state of Florida of young children with autism that are wandering away, they're eloping from their homes, from their classrooms," says Florida state Rep. Anna Eskamani, a Democrat, and one of the lawmakers who sponsored the bipartisan bill that changed the state's swim vouchers.

Best Practices for Health Care

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them. 

Kinga Borondy at Gannett:

A bill pending before the Massachusetts Legislature would establish best-practices standards around treatment of patients on the autism spectrum or those with intellectual and developmental disabilities.

“Terrible things can happen to people with autism or those who are intellectually developmentally delayed while they are in medical settings,” said Maura Sullivan, executive director of The Arc of Massachusetts. “They have been restrained, kept in isolation, suffered medical trauma.”

The legislation, sponsored by Rep. Sean Garballey, D-Medford, and Sen. Jason Lewis, D-Winchester, would offer training to all patient-facing staff, from doctors and nurses to custodians and security officers, on recognizing and adjusting to the challenges presented when treating and interacting with intellectually divergent patients.

The Arc already offers the training to young medical professionals through its Operation House Call program, which was launched in 1991 and uses a network of volunteer families. The program has been integrated into the Tufts School of Medicine and the Simmons School of Health Science, and has expanded to Yale School of Nursing, UMass Chan Medical School and Harvard Medical School.

The bill would set standards for treatment in Massachusetts as well as establish a mandatory training program for all practitioners, with continuing education credits for completing the course.

Helping Disabled People Get Licenses

In The Politics of Autism, I write that  a number of ASD people drive cars.

WBZ-TV's Penny Kmitt:

There's a non-profit north of Boston that's helping students of all abilities get their driver's licenses in Massachusetts.

The Northeast Independent Living Program (NILP) in Lawrence provides services to people with disabilities who want to live independently.

"We're just really out there to try to help consumers live independent lives. It can be as small as tying their shoes or as big as getting their license," said NILP's Youth Services Program Manager Steven Michelson.

NILP is hosting a Massachusetts Driver's Manual Training Program during February vacation. From Tuesday to Friday, students will learn the driver's manual in a way that is fun, engaging, and caters to all different learning styles.

The courses are accessible in person and via Zoom.

"We've gone through the entire manual, broke it down into PowerPoints. We're able to break it down, easy to read fonts, fun exercises throughout the week. We cover one to two chapters. We give multiple opportunities for breaks," Michelson told WBZ-TV.

Nineteen-year-old Adi Chunduru has autism and took the course last year. Despite working with NILP for years he believes this was the group's most beneficial program.

"I would say driving was the thing, the barrier, that they've helped me overcome. I think it did what it set up to do. Their goal is to help people with disabilities get to where they want to be," he explained.

Blue Envelopes in a Massachusetts Community

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Some jurisdictions allow autistic drivers to ask for a blue envelope to disclose the driver's diagnosis in case of an accident or traffic stop .

Temi-Tope Adeleye at WJAR-TV:

Dartmouth [Massachusetts] police are participating in a program to ease interactions with drivers on the Autism spectrum. Detective Kyle Costa said the Blue Envelope program allows drivers with Autism to share their status while following orders. "If somebody is out there that can't communicate as well as others that the program is obviously an awesome option for them," said Costa. 

Housing in Massachusetts

 In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

From BNN:

My daughter’s discharge from a dayhab program threw into sharp relief the grim issue that many families like ours face – a system ill-equipped to serve the burgeoning number of autistic adults. It’s a wake-up call to the urgent need for housing solutions. The Massachusetts Department of Developmental Services (DDS) and its vendors, in their inability to provide necessary support, stand testament to this critical deficiency.

The failing of the state in predicting the surge in demand for housing, despite the availability of special education data, has snowballed into a crisis. Analysis by Autism Housing Pathways (AHP) augurs a considerable number of young adults requiring group home placements and supportive housing units annually. The state does have a supportive housing program that could potentially be scaled up to meet this demand, but the challenge lies in overcoming the lack of political will to channel sufficient funding into these housing and service programs.

Aging Out in Massachusetts and Pennsylvania

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Cheryl Fiandaca at WBZ-TV in Boston:

Maura Sullivan is with ARC, an advocacy group for folks with intellectual and developmental disabilities. She says the situation is dire, a real crisis. "I would say it's gone really beyond crisis and we're looking at a real systemic failure for adults with autism and intellectual and developmental disabilities," Sullivan said.

The ARC estimates there are more than 5,000 in Massachusetts who are not getting all of the help they need. The state tells us, about 70% of those who turned 22 in the last three years are getting some services.

Maura understands the challenges, she is not only an advocate with ARC, she also has two sons with autism. Maura says her son is 22 and has profound autism. She wants him to have a life with dignity and independence where he can go to the bathroom and shower by himself. "These are the little things that I don't know how much other people recognize when you have a child with a more profound disability," Sullivan said.

From WQED Pittsburgh

Autism: Aging Out travels across Pennsylvania to show the successes and challenges individuals and families face when a person with Autism Spectrum Disorder (ASD) turns 21 and navigates new pathways to joining the workforce; living situations; health and wellness; and social engagement. Among the organizations featured in the documentary: Autism Urban Connections Inc., Community Integrated Services, Autism Runs, and Achieva. To see related videos and to explore a list of resources, visit https://www.wqed.org/autism.

 

Improved College Access in Massachuetts

  In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

A July 28 release from Massachusetts Advocates for Children:

Thank you for your advocacy, your voices were heard! After almost a decade of advocacy, Governor Baker signed the higher education bill which provides inclusive educational opportunities for individuals with Intellectual Disabilities and Autism at state colleges and universities. Young adults with disabilities can now be lifelong learners with their peers!

Many thanks to Gov. Baker, Senate Ways and Means Chair Rodrigues, House Ways and Means Chair Michlewitz, Senate President Spilka, Speaker Mariano, lead sponsors Representative Garballey and Senator Lovely, Joint Committee on Higher Education Co-Chairs Senator Gobi and Representative Rogers, and many other important lawmakers.

This law includes provisions that remove barriers precluding persons with Intellectual Disabilities (ID) and Autism from participating in state colleges and universities. Individuals with ID and autism who cannot pass MCAS [Massachusetts Comprehensive Assessment System] and who do not obtain a regular high school diploma can participate as non-matriculating students in courses with their nondisabled peers and participate in extracurricular activities and other aspects of campus life, with supports and services necessary to facilitate inclusion.

The law also ensures state colleges and universities establish guidelines governing selection of individuals with ID and Autism as well as course selection. Supports and services to facilitate inclusion can be provided by the local school district, the Massachusetts Rehabilitation Commission, Department of Developmental Services, or private funding. The law also codifies the MAICEI grant program and allows the special education IEP Team to consider higher education as an option for students with disabilities.

Download the entire document here

View the new law here

Bills on Police Training

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand. 

Tori Yorgey at WSAZ-TV:

Several bills got the approval signature of West Virginia Gov. Jim Justice during a virtual ceremony Wednesday. One of them will require training for certain officers who are responding to those with disabilities.

“I just thought it was a step in the right direction with people with disabilities, specifically autism, that can help the communities and families have a little bit of relief as far as what might happen if they get into an emergency situation or they need assistance with their loved one,” Phenia Simmons, who has two sons that are on the autistic spectrum said.

The bill requires law enforcement and correctional officers to be trained on the best ways to interact with those with autism spectrum disorders.

...

The West Virginia Autism Training Center Executive Director, Dr. Marc Ellison was a strong advocate for the passage of the bill.

“Senate Bill 634 is a really significant step in helping police officers and the community in general understand autism better and hopefully will prevent some really poor outcomes,” Dr. Ellison, Executive Director of Marshall University’s Autism Training Center said. “I’m aware of only two states that require autism-specific training for police officers. So once again, West Virginia, at least in the world of autism support, is kind of a pioneer in leading the way.”

“Thank you again, Governor, for your support in improving life quality for those in West Virginia living on the autism spectrum,” Dr. Ellison said.

The training and guidelines will be developed and conducted at the West Virginia Autism Training Center at Marshall University.

Charles Winokoor at The Herald News (Fall River, MA):

State Rep. Alan Silvia wants police officers as well as teacher aides in elementary and secondary schools to be better equipped in dealing with autistic children and adults.

“It’s very important that paraprofessionals are trained to deal with autistic kids,” Silvia said referring to certified teacher aides.

The 7th Bristol state rep also says police departments everywhere owe it to themselves and the public to require that academy recruits be given in-service training in how to interact with people diagnosed as being on the autism spectrum.

“Police lack mental health disorders training,” said Silvia, who was a Fall River cop for 22 years and a major crimes detective before being forced to retire as result of an on-duty injury.

Silvia in February introduced two bills relative to individuals with autism.

One bill would allow autistic children of parents living at home to remain on their parents’ medical insurance plan past the age of 26.

Silvia says the bill, which has 17 co-sponsors including local state Reps. Carole Fiola and Patricia Haddad, to some extent is pre-emptive in nature.

“The insurance companies so far have not declined coverage, but it’s not the law,” he said.

The original version of the other bill filed by Silvia and 4th Bristol District Rep. Steven Howitt includes a requirement for autism-related training for law enforcement agencies and teacher aides.

It also calls for the installation of video cameras in classrooms and school “quiet rooms” where children with autism spectrum disabilities are taught

College Internship Program Berkshire

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

At WNYT-TV in Albany, Dan Levy reports on College Internship Program Berkshire, which offers support services for young adults with autism and other disabilities as they transition to college, employment, and independent living.

 

COVID-19 and Group Homes

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Heather Hegedus at WFXT in Boston:

Group homes in [Massachusetts] were locked down for close to three months and families were only allowed to video chat with their adult children in order to try to keep the novel coronavirus out of these “congregate living” facilities where individuals are living together in close quarters and sickness can spread more quickly.
...
Individuals with autism and other disabilities may be part of the population who gets sicker from the novel coronavirus than the general population. They often have what’s known as “co-morbid” medical conditions that can make them more susceptible to illness, including COVID-19. Ned gets seizures, and his parents say he doesn’t register a fever so temperature checks may not be a reliable way to screen him for COVID-19.

The story focuses on an autistic man named Ned Hubbard, who has two housemates who got COVID.

Amego, the facility which operates Ned's home, also operates dozens of other residential facilities in Massachusetts.

Amego’s President and CEO, John Randall, says despite equipping staff with PPE and taking numerous precautions to date 46 Amego residents and 71 staff have tested positive for the virus.

...
Statewide, the Department of Developmental Services tells Boston 25 that 1,575 adult residents have tested positive as of early June and 98 adults have died.

It’s not just adults.

Although the Department of Elementary and Secondary Education (DESE) could not tell us how many children in the state’s group homes contracted the novel coronavirus, Boston 25 News has learned one facility, the New England Center for Children in Southborough, had 15 of their students and 19 of their staff tested positive.

Buried lede:

To date, more than 1,800 staff members at group homes in the state have tested positive for COVID-19 and three staff members have died.

The Forebears of the Antivaxxers

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread.

At The Washington Post, Jess McHugh writes that Puritan minister Cotton Mather was a proponent of inoculation agains smallpox.  His opponents were the forebears of today's antivaxxers.

Around 3 a.m. one November morning in 1721, a bomb crashed through the window of Cotton Mather’s Boston home. It had been hurled with such force that the fuse fell off, and it failed to detonate. Attached to the explosive was a warning note: “Cotton Mather, you dog, dam you: I’ll inoculate you with this; with a Pox to you.’’
...
Much like anti-vaxxers of today, dissidents came from a wide variety of education levels and socioeconomic backgrounds and could not fit easily into a single category. William Douglass, the man leading the anti-inoculation charge, was one of the few Boston doctors with a medical degree. The public debate that ensued drew on scripture and suspicion but also on practical argument: Douglass pointed out that inoculation (unlike modern vaccines) remained untested and that Mather and Boylston’s experiments hardly held up to scientific scrutiny.

Like today, too, critics of inoculation did not have faith in those in power. “Where I see the most commonality is a mistrust in leaders: both civic leaders, religious leaders and in scientists,” said Andrew Wehrman, an assistant professor at Central Michigan University specializing in the politics of medicine in early America. He went on to list the many differences, including how quickly people would come to change their minds. In just a few short decades, he noted, some Revolutionary War soldiers would be using their enlistment bounties to pay for their own inoculation.

There was a religious element, too. Some who opposed inoculation spoke of the practice as a violation of God’s will as well as doing specific harm to innocent people. Mather too, drew on comparisons to God and Satan in understanding the epidemic. Instead of saying the people of Boston were simply mistaken, he wrote in his diary that the devil had “taken a strange Possession” of them.

App for Reporting Abuse

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

A release from the University of Rhode Island:

The incidence of sexual abuse of people with intellectual and developmental disabilities is alarming. A 2018 National Public Radio investigation, citing previously unpublished U.S. Justice Department data, found that people with intellectual disabilities are seven times more likely to be victims of sexual abuse than people without disabilities.

Krishna Venkatasubramanian, an assistant professor of computer science at the University of Rhode Island, is looking for a way to help through technology. Venkatasubramanian has teamed with the Massachusetts Disabled Persons Protection Commission to develop an app-based tool to help people with intellectual and developmental disabilities better report sexual abuse. His work is funded by a three-year, $380,510 contract with the Commonwealth of Massachusetts, part of a grant from the federal Administration for Community Living in the U.S. Health and Human Services Department.

“It’s a terrible problem. Abuse is rampant in the community, and there are a lot of obstacles to reporting abuse,” says Venkatasubramanian. “Our goal is to build a tool that makes reporting easier, but also teaches folks how to recognize abuse and what they should do.”

“Violence against people with disabilities is a frequently unrecognized and under-reported problem that has reached epidemic proportions,” says Nancy A. Alterio, executive director of the Massachusetts commission. “People with intellectual or developmental disabilities face significantly higher rates of abuse than the general population. Forty-nine percent experience 10 or more incidents, and shockingly, only 3 % of sexual abuse cases involving people with IDD will ever be reported.”

The app, which is scheduled to be available in 2021, will provide interactive information to help people with intellectual and developmental disabilities identify abuse, easily file a report, and take the appropriate steps in its aftermath to stay safe. In designing the app, Venkatasubramanian is collaborating with the Massachusetts commission, the Department of Developmental Services, and Massachusetts Advocates Standing Strong, a statewide self-advocacy organization run for and by people with IDD, along with the input of clinicians, caregivers, experts and the future users of the app.

Deb Lloyd, project coordinator with Standing Strong, says there is a great need for the app. People with IDD are at heightened risk of being abused, she says, and many times abusers are people they know, adding difficulties to reporting abuse. At the same time, many in the population lack an understanding of what constitutes abuse.

“This is an amazing project,” Lloyd says. “Learning about abuse will be very helpful. Individuals will be able to access the information repeatedly and have a better understanding of the material. They also will be able to report independently. Fear of caregiver interference will hopefully be eliminated. The current reporting system is in writing or by phone and most cannot report without support or telling someone who will report on their behalf without judgment.”

Venkatasubramanian, whose research focuses on cybersecurity, personal safety and well-being, and accessibility with an aim to explore the frontiers of research in computer science to build usable technologies for marginalized populations, began work on the app in 2018 while teaching at Worcester Polytechnic Institute. When he heard the NPR report, he contacted local advocacy groups in Massachusetts and the commission to see how he could help.

In developing the app, Venkatasubramanian, along with psychologist Jeanine Skorinko, a professor of psychology at Worcester Polytechnic Institute, has been working with advocacy groups and talking with people with IDD to understand how they use technology and learn about their daily lives. He learned most were comfortable with technology and most used tablet-based apps. As the app is developed, prototypes will be tested by its intended users to determine what designs are most effective.

“There are a whole bunch of design guidelines that typically are followed when the audience has IDD,” he says. “You have to make sure you don’t have upsetting colors or you’re not giving negative feedback. Some users also may have other conditions. They may have vision impairment. They may have motor disabilities.”

“Our goal is to co-design with people with IDD, not just make them a recipient of the great things we build,” he adds. “We don’t believe we can build for a population unless they’re involved.”

Tom Howard, a URI graduate student in computer science, is helping to oversee the project, working with fellow graduate students Emiton Alves and Mary Wishart. Howard and Alves have been working on story-board-like prototypes of abuse-awareness information, researching how to make it more engaging for users. “This project resonates really deeply with me,” says Howard, of Smithfield, Rhode Island. “I come from a family that’s done foster care my whole life. So, when I heard about a project that would give me an opportunity to potentially help so many people, it all just fell into place for me.”

Much of the foundational information needed to design the recognition and response functions is already available, including using instruction from a commission workshop tailored to educate people about abuse and how to protect themselves. For the reporting tool, Venkatasubramanian and Skorinko will survey clinicians and caregivers to understand the factors around abuse and how they might affect a victim’s ability to report abuse.

“We have to understand the abuser’s mindset, the victim’s mindset, their lifestyle, the circumstances around the abuse,” he says. “We want to build an app that allows victims to report abuse as safely as possible.”

When completed, the app’s reporting function will assist individuals in reporting abuse to the Massachusetts Disabled Persons Protection Commission through its 24/7 hotline or the internet, Alterio says.

“The hotline number could be preloaded into the app so a user would not need to find the number,” says Alterio. “The app will also work with our soon-to-be new web abuse reporting portal. Individual pre-loaded information, such as name and contact information, could auto-fill the abuse reporting form and make it easier to use the portal. Once the report comes in, the cases will proceed through the commission’s usual screening, referral, and/or investigation processes.”

While the app is being designed to be used through the Massachusetts commission, Venkatasubramanian says its recognition and response functions will be universal and its reporting capability could be adapted for use in other states.

Autism Fitness Programs

In The Politics of Autism, I discuss the health problems of people on the spectrum.  Yesterday's post discussed the problem of obesity and physical inactivity.  Here are a couple of efforts to address the problem.

Kayla Burton reports at WGGB-TV:

The Holyoke Public School system hosting an autism fitness certification class this weekend meant to help people off all ages with the disorder.

While many autism programs address the cognitive side of autism, Founder, Eric Chessen, told Western Mass News the goal of this program is take on the physical health of those with the disorder.

"It's not just for highly motivated individuals who are below 12 years in age this is really for, everyone and what we're looking at is fitness as a gateway as optimal development to other areas," Chessen said.

The Autism Fitness Program was developed roughly 15 years ago.

FROM 2018: Dion Lim at KGO-TV in San Francisco:

Puzzle Piece Athletics is a first-of-its-kind gym in the Bay Area serving kids with autism. With hard work, determination, encouragement, and a special compassion lives are changed.

RELATED: New Bay Area gym specializes in CrossFit training for kids with autism

Join us as we introduce you to some of the wonderful people working out their muscles of happiness and hope.

For more information about Puzzle Piece Athletics, you can visit their Facebook and Instagram pages.

Problems with Group Homes

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

From the US Department of Health and Human Services:

This joint report is issued by the U.S. Department of Health and Human Services, Office of Inspector General (OIG); Administration for Community Living (ACL); and Office for Civil Rights (OCR) to help improve the health, safety, and respect for the civil rights of individuals living in group homes. The joint report provides suggested model practices to the Centers for Medicare & Medicaid Services (CMS) and States for comprehensive compliance oversight of group homes to help ensure better health and safety outcomes. In addition, the Joint Report provides suggestions for how CMS can assist States when serious health and safety issues arise that require immediate attention.
...

In OIG’s audits of Connecticut, Massachusetts, and Maine, the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities. These audits found that these State agencies:

• failed to ensure that group homes reported all critical incidents,
• failed to ensure that all critical incidents reported by group homes were properly recorded,
• failed to ensure that group homes always reported incidents at the correct severity level,
• failed to ensure that all data on critical incidents were collected and reviewed, and
• failed to ensure that reasonable suspicions of abuse or neglect were properly reported.

...
Our suggestions for ensuring group-home beneficiary health and safety involve four key
compliance oversight components:

1. reliable incident management and investigation processes;
2. audit protocols that ensure compliance with reporting, review, and response requirements;
3. effective mortality reviews of unexpected deaths; and
4. quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.

Autism and Housing

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Jamie Stengle writes at AP about autism and housing.  She describes a Pittsburgh-area complex that serves adults with autism.

The complex, called the Dave Wright Apartments, opened in December and is among innovative housing developments popping up across the U.S. to serve those who were diagnosed with autism as children amid increased awareness about the disorder and changes in how it's defined. The developments are often spearheaded by parents who see their adult children's desire for independence and wonder who will care for them in the future.

According to the A.J. Drexel Autism Institute, 87 percent of adults with autism live with their parents at some point between high school and their early 20s — a far higher percentage than the general population.

"They want to live independently and they want to work. They want to be involved. Right now there are just not enough opportunities for them to do those things," said Debra Caudy, who is working with her husband on a housing development near Dallas inspired by their 19-year-old autistic son, Jon.

...
Elliot Frank, president of the nonprofit Autism Housing Development Corporation of Pittsburgh, which was behind the Dave Wright Apartments where Masha Gregory lives, has watched as a community has formed there. Frank said he came up with the concept after hearing a businessman talk about employing autistic adults and wondering where they would live.

"The whole concept of what we call disability housing, it's not what we used to think about," Frank said.

On September 10, 2016, dozens of autistic people, individuals, family members, service providers, officials from state human services and housing agencies, finance professionals, developers, and designers met to address the challenge of autism housing in Massachusetts. This project was joint effort of Autism Housing Pathways, The Arc of Massachusetts, and Advocates for Autism of Massachusetts.  From the just-released white paper:

• There is a small core of housing models that could be collectively adapted to the needs of a wide variety of residents:
• Individual apartments and condo
• Shared living
• Inclusive small footprint units (such as micro-units and single room occupancy) 
• Inclusive co-housing
• Transitional housing
• There is still a role for congregate housing for some individuals with extreme maladaptive behaviors, but even this model can be re-imagined to create greater self-direction and privacy.
• Drop-in services for cueing are needed.
•  Affordability, the shortage of vouchers, staff training and quality, and transportation are systemic problems.  Beyond these, most barriers to housing are more individualized.
• Incorporating Braddock and Rowell’s “Six Most Common Home Modifications”, plus soundproofing, into new housing for people with autism, and into a percentage of new housing generally, would meet the needs of a majority of people with autism, while more significant modifications would be needed for about a quarter of autistics.
• Technology can improve people’s ability to live independently, but they will need options to pay for assessments and the technology (including apps), whether through MassHealth, DDS, or other insurance.
• Good communication, education about housing options, and a person-centered holistic approach that starts early is conducive to a good outcome. This approach should be embedded into a beefed up transition process that incorporates applying for housing vouchers and improving independent living skills.
• The housing sector needs to better understand autism. The housing committee of the Autism Commission should consider expanding its membership to include more representation from the housing sector. Training for housing professionals in autism should be explored.
• Data collection should be undertaken to answer questions about overall housing demand, demand for the models discussed, and homelessness in the autism community. These data can be the basis for establishing housing production targets

The Center for Integrated Adult Autism Services

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed companies and nonprofits that provide them with training and experience.

Kathleen McKiernan reports at The Boston Herald:

Autistic adults in Massachusetts will for the first time be able to access employment, clinical and housing services simultaneously through a groundbreaking partnership between Work Inc. in Dorchester and the May Institute in Randolph.

The Center for Integrated Adult Autism Services — which officials are calling the first of its kind in the region — is designed to provide adults with skills and resources they need to live and work independently.

“This is a very unique, unprecedented collaboration between a phenomenal clinical agency like the May Institute and a phenomenal vocational agency like Work Inc.,” said James Cassetta, president of Work Inc. “Over the years, there has been little to no collaboration between the clinical expertise and vocational.”

...
It was created in response 
to the state’s Autism Omnibus Act, a measure hailed as landmark legislation passed in 2014 to address unmet needs of people with ASD who are 22 or older 

An April news release from the May Institute:

May Institute and Work, Inc., two Massachusetts-based organizations committed to improving the lives of individuals with autism spectrum disorder (ASD) and other special needs, have recently opened the Center for Integrated Adult Autism Services to provide clinical, employment, and housing services for adults with ASD across Massachusetts. The Center is also able to respond to the needs of individuals with a dual diagnosis of ASD and a co-occurring disorder.

The Center’s goal is to equip individuals with the skills, resources, and supports they need to live and work successfully in their communities. Designed as a “center without walls,” services are provided at the point of need.

Services are funded by the Massachusetts Department of Developmental Services (DDS) and through third-party insurance. The Center is now accepting referrals for adults on the autism spectrum who are in need of a combination of clinical and therapeutic supports, employment and supported education services, and housing options that include independent and shared living.

“Today, we face an overwhelming number of individuals with autism who are aging out of federally funded educational programs but still in need of continuing services and supports,” says Lauren C. Solotar, Ph.D., ABPP, President and CEO of May Institute. “These young adults are often confronted with daunting challenges as they transition into adulthood – challenges such as finding appropriate housing and services, securing meaningful employment opportunities, and building a full and integrated life.”

At the new Center, experienced clinicians employ the principles and methodologies of Positive Behavioral Interventions and Supports (PBIS), applied behavior analysis (ABA), cognitive behavioral therapy (CBT), and dialectical behavior therapy (DBT) to meet the needs of the individuals they serve, including those with a dual diagnosis of ASD and a co-occurring mental health issue such as anxiety, depression, and attention deficit hyperactivity disorder (ADHD). In addition, the Center’s clinicians provide training to staff from the DDS, service providers, and family members. -

 ...

For more information, contact Kelli Leahy at 781.437.1280 or kleahy@mayinstitute.org.

An Argument for Electrical Stimulus Devices

In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.

At The Wall Street Journal, Harvard professor Paul Peterson argues against the proposed FDA ban on electrical stimulus devices, citing the example of his own 45-year-old son David.

Denying treatment to people with disabilities when it is available to others violates the equal protection clause of the 14th Amendment. In its 1997 ruling in Judge Rotenberg Educational Center Inc. v. Commissioner of the Department of Mental Retardation, the Massachusetts Supreme Judicial Court unanimously affirmed a lower-court finding of contempt against the Commonwealth of Massachusetts for its interference with the use of electronic stimulus devices. The FDA’s proposal ignores that decision.

The FDA claims that alternative treatments are available. It is wrong. After trying many other institutions and therapies, including the drugs Mellaril, Thorazine, Haldol, Ritalin and Noctec, David in 1988 entered the highly regarded Neurobehavioral Unit at the Kennedy Krieger Institute that specializes in the treatment of self-injurious behaviors. Specialists explored a wide variety of treatment protocols, including various drug therapies. After four months, the center’s experts, finding no effective alternative, agreed that placement at the Judge Rotenberg Educational Center was the best available option for David. Our local school district authorized the placement.

The FDA asserts that skin shocks are no longer necessary but it provides no documentation that drugs are effective for people like my son. In the past, drug therapy aggravated David’s self-injurious behavior. The use of psychotropic drugs also poses multiple risks of physical and psychological side effects. By contrast, skin shocks have no demonstrated side effects beyond a temporary redness to the skin that usually disappears within minutes.

Moving Away from Sheltered Workshops

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

At The Boston Globe, Katie Johnson writes about sheltered workshops.  Triangle, a 45-year-old Malden nonprofit that once housed a large sheltered workshop, has shifted to placing disabled people into jobs in the community.

“It’s a human rights issue,” said Coleman Nee, chief executive of Triangle, who was the state’s Secretary of Veterans’ Services during the Deval Patrick administration. “Everybody has the ability to be competitively placed if that’s what they want, regardless of the nature of their disability and how much work it might take to get them there.”

Slightly more than one in four working-age people with disabilities is employed, according to the Department of Labor. But the movement to get more of them into the workforce is growing, part of a shift toward inclusion and self-advocacy by people with disabilities, said Margaret Van Gelder, director of employment and family support at the state’s Department of Developmental Services.

“They’re coming into their own, speaking up for themselves, pushing for opportunities they want,” she said.

A decade ago, about 6,000 people with disabilities toiled in 90 such sheltered workshops in Massachusetts, according to the state. In response to federal policy changes, the agency unveiled a plan two years ago to close all such workshops and get everyone into day programs or jobs in the community, a goal it says it will hit by the end of June.

Nationwide, the number of sheltered workshops with sub-minimum-wage certification has dropped by almost half since 2001, from 4,724 to 2,417, according to the Institute for Community Inclusion at the University of Massachusetts Boston. Recent federal lawsuits over sheltered workshops in Oregon and Rhode Island accused the states of violating the Americans with Disabilities Act, and Rhode Island is facing a $1 million annual fine for not taking steps to move people out of these workshops.

Services in Massachusetts

In The Politics of Autism, I write:

Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.

Susan Senator, the author of Autism Adulthood: Strategies and Insights for a Fulfulling Life, writes about Massachusetts:

Now the number of people diagnosed with autism is greater compared to decades ago: 1 in 68. And even though the CDC recently announced that the numbers may be leveling off, long vacation days have not gotten any easier.

There are something like 5,700 families in crisis like ours in the state who need help teaching their children safety and home, community and life skills. These families may also need help overnight to keep the child safe in the house.

The Arc of Massachusetts, a statewide advocacy organization, says on its website that “across Massachusetts, 18,000 families are caring for a family member with an intellectual or developmental disability in the home.”

Leo Sarkissian, executive director of the statewide group, said they are now pushing for the Legislature to increase the budget for supporting families in various ways: $15 million for this year and a $25 million increase to help families with older children and young adults. These increases would get more money to families to make the support “meaningful,” Sarkissian said, and more than just a few hours a week of respite. Increased family support would help hundreds of families, including those who have a young adult turning 22.

“This year 900 young adults will be entering the system, a 34 percent increase in just five years,” Maura Sullivan, the ArcMass director of government affairs, said. “So the Arc is also supporting an increase in funding for the ‘turning 22 budget’ and other critical adult services.”

In this era of community inclusion and accommodations, residential placements can and should be avoided. Last month Gov. Charlie Baker released a favorable budget number, with a $5 million increase for family supports. Now we need those numbers to be increased in the House and Senate to reach more of the families in highest need.

We were lucky to get Nat the support he needed, when he needed it. Now 26, Nat has learned enough independence as a young adult that he no longer lives in a group home. He has an apartment with a caregiver and lives just 10 minutes from us.

But others we know are not as fortunate

Autistic Advocate for Police Autism Training

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Dani Segelbaum reports at The Milford Daily News:

It was seven years ago at Lexington Christian Academy where activist and advocate Lydia Brown began writing the text for a bill that would provide police with training on autism and other developmental disabilities.

Like the people Brown advocates for, Brown, too, is autistic. Now a student at Northeastern Law School, Brown, the chairperson of a state council on disability, is urging the Legislature to pass bills on police and criminal justice training for working with people who have autism.

The bills in the House (H. 2098) and Senate (S. 1264) would institute police training on autism and other developmental disabilities to reduce harm to people interacting with law enforcement or prison staff. Police and corrections officers would learn basic information about autism and other disabilities and techniques to de-escalate conflict.

“This will provide a baseline education. We are not expecting police to become experts. We are expecting the many police who strive to do their best regardless of what ends up happening will have tools to do their best,” Brown said after testifying. A similar bill in the House (H. 1244) addresses training of law enforcement on ways to deal with individuals suffering from mental illness.

The bill, sponsored by Sen. Cynthia Creem, D-Newton, would require police training be done by mental health practitioners, would also allow a police officer to take someone with a mental disability to a hospital instead of criminal prosecution.