We Need a Full Continuum of Care for Adults with Severe Autism

No community provider was equipped to serve our grandson. ICFs (intermediate care facilities) are like ICUs of the I/DD world, providing a centralized level of care unavailable in the fragmented community system.

 
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The author and her husband with their grandson, Aidan.

 By Joan Kelley

Twenty six years ago, our beautiful two-year-old grandson had come to live with us as a bright-eyed, engaging, talkative toddler. Within six months he began to exhibit odd behaviors, extreme sleep issues and lost ability to use his three and four-word sentences. Little did we know that a diagnosis of autism awaited us, or what that would mean.

Among other things, it has meant a Herculean struggle to find appropriate services for Aidan. In addition to the stress at home — sleepless nights, extreme behavioral issues, including daily clean-up of feces smears in various places through the house — we faced ongoing resistance from the schools and the social services agencies. It started in preschool when the special ed director decided they were not about to “spend money they didn’t have” on this intensely challenging child. Special education then limited provision of much needed behavior services, training and oversight necessary for a child with extreme needs.

After the Kansas Winfield State Hospital closed its doors, money was released for Medicaid HCBS, or Home and Community Based Services. We were excited about our move back to Kansas when told by community providers that funds and services were available to help support our grandson. Instead, he was put on an HCBS waiting list, unable to access services. We were never informed what “happened to all the waiver money” that was supposedly available after the Winfield closure.

After applying pressure on state agencies and community providers, we accessed waiver services, only to find that significant restrictions prevented implementing a successful program. For example, overlapping of staff was forbidden under the waiver. HCBS would not cover critical staff meetings, necessary to develop solutions for decreasing pervasive, maladaptive behaviors. Nor could we pay more than $8.00 per hour for direct staff under the waiver. 

Due to the self-injurious, aggressive, eloping, and other behaviors, direct support staff did not stay around long. We found ourselves continually recruiting, interviewing, and training new staff along with constant 24-7 “surveillance” of our grandson, making sure he did not escape out the door in the middle of the night. We were also exhausted and in crisis.

We found a unique solution during this time. In June of 2000 we became licensed, therapeutic foster parents, accessing a funding stream which paid a per diem, providing the flexibility to pay an incentive wage to direct support staff and hire professionals for support, oversight, staff training, and team meetings.

Many skills were gained over the next few years, until our grandson began the journey through puberty. In order to keep him and others safe on community outings, we had to maintain a 2 to 1 staff ratio. We were grateful we could do this, but when our precious young man became so strong and aggressive that I became afraid of him, our days with him at home were numbered.

At age 14, he was placed in what is now known as a Psychiatric Residential Treatment Facility (PRTF). Staff there were nice, but inadequately trained to handle the most challenging individuals they endeavored to serve. At that time our grandson began to lose skills, as the school there seemed ill-equipped to follow through with the intense behavioral program he enjoyed previously.

The PRTF also experienced staff oversight challenges; at one point we had to hot-line in suspected abuse. Shortly after that, the PRTF suddenly decided that Aidan was “stable”, and it was time to discharge him.

Everyone we approached in the community indicated they were not equipped to provide the intense levels of care necessary for Aidan’s success and safety, as well as the safety of support staff. That’s when we pursued an evaluation and medication wash at the Kansas Neurological Institute (KNI).

The state required us to thoroughly document that we had exhausted every community resource and option, which we did, but his doctor was extremely reluctant to sign on for his admission to KNI. After a year of struggles, prayers and convincing, he was admitted to KNI on a temporary basis.

The staff at KNI were wonderful. They were able to not only safely reduce the years-long, toxic mix of medications from five down to one, but KNI had already incorporated the Person Centered Care Model for several years. They developed a program for Aidan which included frequent community outings, exercise, grocery shopping, part time supported employment, etc. while addressing extreme behaviors.

After stabilization, we looked forward to re-integrating Aidan back into a community setting closer to home. As we looked at possible community options, we visited a number of single and duplex group homes. To our surprise, some were so poorly maintained that I would not have wanted to see a pet dog to live in some of these conditions. While this was disturbing enough, we were also shocked when numerous community providers refused to serve him.

Our grandson has lived on a campus of homes at the Kansas Neurological Institute for ten years; this facility has been a godsend, and has served him well. Aidan’s condition is also lifelong. As with many fragile developmentally disabled individuals affected with most complex conditions, he needs a level of care that is difficult to find, maintain, and oversee in a fragmented community system. The centralized care model is recognized as a needed alternative for some individuals in our Supreme Court’s Olmstead ruling, yet this important aspect of care is being dismantled by zealous advocates, most of whom have never lifted a finger to care for such profoundly disabled individuals.

I believe in community, and I also believe, as most rational-thinking people do, that Intensive Care Units in hospitals across the nation are a critical part of our health care system. Intermediate Care Facilities (ICFs) such as KNI are the Intensive Care Units for our DD loved ones. We should no sooner get rid of ICUs than we should ICFs. We need the full continuum of care.

Shall we devalue the lives of the weakest among us by continuing to close down the only providers capable of serving them? My husband and I say a resounding no! — joining with thousands of families across the nation who know firsthand what it takes to care for our most fragile citizens.  

Joan Kelley is the grandmother of a young man with a severe form of autism. She serves as the Kansas State Coordinator for VOR.



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Help, I Need Somebody (But Since I'm the Mom, the Answer Is No?)

A Kansas single mom of a severely autistic son discovers that the desperately needed supports denied to her are readily available to foster carers. Another tale from our broken system.

 
The author’s son enjoying a birthday outing.

The author’s son enjoying a birthday outing.

 

By Beneeta Dean-Felton

I am the proud mother to three beloved sons, the middle of whom has a severe form of autism. At 12 years old, Preston is nonverbal, is not potty trained, and already has the size and strength of a man, which is a problem because he can be aggressive. If he pushes you, you can’t stop him and if he runs away, you might not catch him.

A few years ago I moved from New Hampshire, where I had been teaching, to pursue a new teaching opportunity at the federal penitentiary in Leavenworth, Kansas. Of course I needed help at home, particularly before and after school when I needed to be at work and couldn’t physically be there for Preston. In Kansas, disability services are determined by the county. As it turned out, my area had the worst services in Kansas. Everything is contracted out, a decentralized system so complex it felt like a corn maze where you can’t find the end: calls that were not returned, year-long waiting lists, and already-full agencies. I have a three-page document that shows every single service I asked for and couldn’t obtain.

After pleading, the county office offered Medicaid and a before- and after- care assistant, contingent on my finding my own worker at $9.35 per hour, that would be paid through state Medicaid funds. I used every resource I could think of to find a worker: Facebook, Indeed, flyers and advertisement, you name it. I scheduled dozens of interviews. If I scheduled 30 interviews though, only about five people would show up. I did end up hiring two separate workers and in each case they worked one day and then quit. Working with a large aggressive child, really now a young man, was just too hard for $9.35 per hour.

I was then informed by our Medicaid insurer that if I didn’t try harder to find somebody they would take services away. They recommended an agency, but the first worker the agency sent quit after one day. Finally they sent a worker who stayed for three months. But the agency paid her late and their checks bounced, and she left as well. My employer reprimanded me for arriving late and leaving early from work, but I had no choice. I was then assigned to a job with strict hours and no access to my cell phone. The unbearable stress of my home and work situations took a huge toll on my mental and physical health. I asked the child welfare officer what else they could offer me. The answer was “There is nothing I can offer you.”

At one point I made the difficult but desperate decision to leave Preston at home in the care of his older brother who would put him on the school bus. Unfortunately, my eldest fell asleep and Preston eloped, ending up in the street naked (he hates clothes so much). I am obviously not proud of this episode and regret what happened, but in my experience almost every family with a severely autistic child experiences something very similar to this. The police took him to the hospital, and the Department of Child and Family Services asked if I wanted to put him in foster care. At that point that was my only option to get him services. Preston has now been in state custody in a foster home since November 2018. Even though this is not a case of abuse (instead, Preston is deemed a “child in need of care”), I am treated like a felon, allowed only weekly, one-hour supervised visits with him. 

During a case plan meeting, the foster home provider said she needed an array of services to care for Preston, including aide support, respite, and home therapy. And guess what, she got them. Wait a minute, I said, what do you mean she instantly gets these services I’ve been fighting to get for years now? The response? I’m not entitled because I’m the biological parent. 

This was complete lunacy. It seemed the state of Kansas would rather separate families, at incalculable emotional not to mention monetary expense, than offer needed support in the first place. It was a perverse penny-wise-pound-foolish situation. It also occurred to me that if I had moved just 20 miles away, to Missouri, I would not be in this predicament, we likely would have received appropriate services in the first place. Autism is like a game of lottery, you luck out or you don’t. And if you don’t your life can become a living hell.

Through this painful process my income was too high to get a court-appointed lawyer and I can’t afford a private lawyer. The judge in this case recognized the injustice of my situation and appointed me a lawyer. I am now working with him to figure out next steps. The best thing for Preston may be placement in a full-time residential school where he can have access to vocational services, social opportunities, a vocational farm, therapies and so much more than a foster home could. But he could also return home. If only I could get the help.

Beneeta Dean-Felton is the mother of three boys, one of whom has a severe form of autism. She lives in Leavenworth, Kansas.

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The Crisis Call No One Is Willing to Hear

A family’s trip through “the worst hellish nightmare you could ever have” and a system unprepared and unwilling to help.

 
The author, right, visiting with his son Joshua.

The author, right, visiting with his son Joshua.

 

By Vance Goforth

We begged for years for help to no avail. This is the story of our son Josh, who we adopted after he suffered severe abuse in infancy, and who has severe nonverbal autism, along with comorbid conditions like seizure disorder, cerebral palsy, bipolar and disruptive mood dysregulation disorder. He is now 18 years old.

The behaviors started in childhood. By eight years old, issues at school got progressively worse and he was put on home bound after they became so severe the school system couldn’t keep him safe anymore. We sought help through doctors and medications at first and then psychiatrists who recommended inpatient treatment ASAP. He was even accepted into a treatment facility only to be called the day before admission to be told that they couldn’t treat Josh because we owned a wheelchair and their facility wasn’t ADA compliant. 

Everything started escalating during a trip to town a few years ago, Josh got upset and kicked out our van window and tried to crawl out at 55 miles per hour.  I had to pull him back into our van and tried to keep him calm until we could get home. We decided to call a help number on my insurance card and see what they recommended. To our shock, they didn’t know what to do, so they called the Department of Children’s Services. DCS told us since this wasn’t an abuse case, if we didn’t see them in 48 hours then they weren’t coming. So there we were, making calls that no one knew what to do with and ended with us facing crisis level behaviors with no help.  

The behaviors kept escalating and he was targeting our youngest daughter to the point that she was hiding daily from his outbursts. The nightmares really started as we began to call for help again. As we called crisis during these behaviors, we heard statements like, “We’re not prepared for a child as low functioning as your son,” or “If your son was suicidal then we could help.” Yet again, crisis responders would leave and we were dealing with the severe outbursts on our own. 

We were advised multiple times to take Josh and “drop him off” at an ER department and let the state take custody. We were also told to get a divorce, because “it’s easier to get help if the parents are separated.” Needless to say, we didn’t want to call crisis after some of the interactions we had. 

Finally, we kept begging for help and the Tennessee Department of Intellectual and Developmental Disabilities came to our home and told us they would find us help. DIDD couldn’t offer us anything until Josh turned 22, so they called and set up an appointment with Children’s Services. We were nervous about this because of the reaction we had before but we agreed to go to a meeting.  

During this interview, we were asked why Josh was no longer welcome in our home. I explained that wasn’t the case, we just needed help desperately. They requested documents from us and I provided them and we never heard back from them. Joshua’s behaviors had become daily at this point and after two weeks, I called DIDD and asked why they told DCS that Josh was no longer welcome in our home. They said, “You don’t understand, if we didn’t report it that way, they will never help your family.” I was absolutely blown away after this, not only did we not get help, they never followed up on the situation and he was getting worse by the day.  

DIDD finally made a referral for Joshua to get into a new state program called ECF choices in July 2016. He was accepted into this program and we were told he would get respite care, in-home services and other therapies and resources as needed. We thought yes! We’re finally getting help! But days turned into weeks and weeks into months. My wife was sending emails to our coordinator begging for help but the reoccurring theme was “no providers available.”

From 2016 to May 2017, the behaviors increased exponentially and had become very dangerous with severe aggression and self-injurious behaviors. In May of 2017, we still had not received the promised services and I was out of town for a conference when I received a call that Josh had a severe outburst and my wife had no choice but to call crisis again. This time crisis said that Josh needed help but couldn’t find any facilities that had open beds. He was extremely helpful but every path he tried was a dead end. 

So he called DCS, and this did not go well for the situation. They came out while crisis was still at our home and began interviewing our other children on our back deck as they watched through the window as my wife was hit, slapped and kicked just trying to keep Josh from hurting himself. The crisis worker ended up apologizing for calling them because he said “I’ve never had an experience like this before,” and he couldn’t understand why the situation was being handled the way it was.   

The social workers “watched through the window as my wife was hit, slapped and kicked just trying to keep Josh from hurting himself.”

After all of this, my wife and family were left alone with no help after he got his meds and took a nap. The next day our coordinator said to meet her at a Knoxville hospital and they would get Josh treatment. My wife and father had to self-transport Josh even though we had voiced concerns about severe outbursts he had while we were driving. When they arrived, we were yet again turned away and told that the hospital couldn’t provide treatment. Even though they would not treat Josh, they didn’t want my wife to leave with him over safety concerns. They also advised taking him to an ER and discussed relinquishing custody in order to get help.  

Finally, they got Josh home and he was accepted to a hospital in Georgia the next day. Again, my family had to transport him because an ambulance service refused to do the transport due to his aggressive behaviors. He spent 12 days at this hospital and was sent home because “they witnessed no behaviors.” Four days later he was tearing our house apart and hurting himself severely. I made the call to get him back into the hospital but was informed, “it doesn’t work that way.” I was told he had to be turned down by every treatment facility in Tennessee, again. This process takes months and he was getting dangerously aggressive at this point.  

We were provided with ABA therapy at this point and it didn’t take long for our therapist to see that Josh needed residential treatment and that was what they recommended. Our therapist eventually resigned and we didn’t get ABA after that. We finally received one-third of the in-home services that he was supposed to get in September 2017 and the behaviors kept increasing over the next few months. He had got so severe that he had broken several teeth and had done over $17,000 worth of damage to our home and vehicles.

My wife and I had become increasingly isolated from everyone around us during this time and we struggled to keep everyone from seeing how severe our son’s behaviors had become. We basically had confined ourselves in our home, taking turns trying to minimize the behaviors as much as we could all while being told that help is on the way.   

I cannot even start to describe what life was like during December 2017 through February 12, 2018. The behaviors had reached a level that can only be described as the worst hellish nightmare you could ever have. To watch your child you love so much inflict so much harm upon himself is too much to bear. The strain this brings is indescribable and even that isn’t an accurate description.  

“To watch your child you love so much inflict so much harm upon himself is too much to bear. “

The stress was building day by day and on February 2, 2018, the nightmares went into overdrive. We were coping the best we could and trying to keep life as semi-normal as we could for our other four children. On that day, my wife Kristy had stayed with Josh while I took our other son Camden to workouts. I was on my way home when I received the phone call. At first the call was totally indistinguishable from all the screaming that was taking place. My heart sank as I tried desperately to find out what was happening, then I figured out it was one of my daughters that had called and finally I heard “It’s Josh” through the screams.  

It felt like a shock of electricity went through me before I went completely numb. I had no idea what was going on but I was trying desperately to just get home. I was crying and praying as I drove as fast as I could and Camden was crying hysterically and begging God to help his brother. I actually arrived before the first responders and as I ran in the house, Josh had just stopped having the most severe seizure we had ever witnessed. Kristy had called 911 when the seizure kept going to the point that Josh quit breathing and turned blue. He gasped for air and started breathing again just seconds before I arrived home.  

Whatever happened during this seizure changed Josh and the behaviors became even more amplified than before. Over the next ten days, I can’t even say we were handling the outbursts because that would be a lie. The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh. 

“The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh.” Here, two photos of the author after a series of his son’s aggressions.

“The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh.” Here, two photos of the author after a series of his son’s aggressions.

Josh would bite his wrist until it was almost down to bone and began breaking all of his teeth off by hitting his head on the floor and walls, and hitting his hand while biting it. I was bitten over 50 times during three different outbursts and received lacerations, bruises and a severe black eye that may have caused permanent damage. Josh had extensive injuries from the self-injurious behaviors and was not calming down at all. We visited two different ER departments during these outbursts and mobile crisis was contacted twice. Mobile crisis never did the face to face evaluation that is required by state guidelines. 

We took Josh back to his doctor the next morning after being in ER rooms all night and his doctor forced the issue and made crisis respond. Josh was eventually transferred after a three-day stay in another ER room but we had to get lawyers and judges involved just to get the treatment he needed. After a few weeks and multiple legal issues he was transferred from Georgia, where they had said before he wasn’t having issues, to South Carolina where they recognized the severity of the behaviors. He has been in treatment there for 14 months now. 

Joshua is making improvements in his residential program. It took many years of traumatic dead ends before he received appropriate treatment.

Joshua is making improvements in his residential program. It took many years of traumatic dead ends before he received appropriate treatment.

When Josh finally received the needed treatment, he started slowly making progress. Springbrook has been amazing and not only treated our son but also encouraged and gave advice to the whole family. After 14 months of treatment, Josh is scheduled to be the first resident in a new experimental housing program in Tennessee. Hopefully he will be ready for this program within the next month or two.

Without naming organizations specifically, here are just a few things we have been told while seeking help for Joshua.

1) If your son was suicidal we could help, but since he is so low functioning we are unprepared for a child like Joshua.

2) Your best option may be to drop your son off at a emergency room. (Basically telling us to abandon him! Yes, this was really suggested to us and more than once!)

3) You’re approved for certain services but they aren’t available in your area.

4) Your behavior analyst quit and you will not have these services anymore because one isn’t available in your area now.

5) You can’t get the services you are requesting because your son is a minor.

6) You are approved for respite care but it’s not available to minors.

7) Your son can’t go into residential care because he is a minor.

8 ) You have 24 hours to pick up your son or you will be charged with abandonment. While another agency is telling you he can’t return home until he is treated and is stable.

9) Every facility in the state must deny admission for your son before you are eligible.

10) We can’t take your son because our facility is not ADA compliant.

11) We can’t take your son because this is not an abuse case.

12) If we separate or get divorced we might get priority for services for our son.

And the list goes on. Is everyone seeing the need for changes to the system yet? —VG

We were in pure survival mode for so long, we didn’t know how much all of this had affected our other children and family members. Joshua’s siblings love him dearly and were quietly trying to deal with the situation as they watched things that no child should have to ever witness. After Josh was in treatment a few weeks, they began to open up to us about everything and it hit us like a ton of bricks. We were so consumed by managing the behaviors and keeping everyone safe, that we didn’t realize how much the stress was affecting all of us. Slowly but surely, the kids began to heal from all of the trauma and we started seeing improvement in school and other activities.

After Josh finally got the treatment he needed, we created a Facebook page, A Voice for Joshua. I was determined that I would advocate for issues affecting individuals like Josh who have severe ASD and comorbid conditions. I’m not the most eloquent speaker and my posts are usually more solutions-oriented than other bloggers who can effectively pull on heartstrings, but I’m determined to keep advocating and sharing his story until needed changes take place.  

Please join us in this journey and advocate for Josh and others who face desperate situations without appropriate resources and services.

Vance Goforth is the father of five who lives in Tennessee. You can find A Voice for Joshua at facebook.com/pg/changeforjosh

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Autism's Quiet Heroes: The Siblings

 
Photo of Zoe courtesy of the author

Photo of Zoe courtesy of the author

By Melissa Collins-Porter

For this year’s autism awareness month, I’d like to honor and celebrate the siblings. They love their brothers or sisters fiercely, yet quietly endure being dragged to therapists’ offices and doctor appointments, become basically ABA-certified by the time they’re 12, and get used to only Mom or Dad coming to their events because one has to stay with their sibling. They often are forced to concentrate on homework amidst what reasonable people would call total chaos. From a young age, they have an awareness that at some point, they will likely become caregivers to their sibling. They may feel guilt about the fullness of their own lives (friends, sports, activities, travel, independence, college) in contrast to that of their sibling. They may feel pressure to be “the quiet one,” “the good one,” “the easy one.” They have become used to cancelled plans, destroyed or lost personal items, and giving up their own preferences to appease their brother or sister. They tirelessly stand up for their siblings when people ask questions, stare, or use “autistic” as a pejorative at school. Underestimate them at your peril, because they grow up to be extraordinary adults and you want them on your side. This one right here is my hero.

The writer is a filmmaker who lives in Southern California.

 

Federal Bill Would Put Jobs Out of Reach for Severely Autistic Adults

Everybody should have access to work, but a new bill, based on the fantasy that all intellectually disabled adults could achieve competitive employment, would trash cherished job programs for the severely disabled. 

 
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Under the Transformation to Competitive Employment Act, the author’s 20 year-old severely autistic son, and countless others like him, will be relegated to the status of permanent volunteers, effectively prohibited from landing paid employment.

By Jill Escher

My son Jonathan is a delightful nonverbal autistic 20 year-old man. Powerfully built, he has a supercharged energy and a deep well of affection for loved ones and his iTunes library. But Jonny is also profoundly intellectually impaired. Accomplishing even simple tasks requires vigorous prompting and continuous oversight, and chances are that along the way he might bite, stand on, or even throw his chair. As muscular and lovable though he may be, his chances of landing a competitive job are exactly zero.

The TCEA was introduced on January 29, 2019 by Congressman Bobby Scott (D-VA-3), chairman of the House Education and Labor Committee, Senator Bob Casey (D-PA), and Rep. Cathy McMorris Rodgers (R-WA-5).

Nevertheless I can envision that some day Jonny could participate in a disability program engaging in simple but important work (albeit with hawk-like oversight and prompting), perhaps boxing or moving heavy objects, or picking up garbage. But under a federal bill introduced in January, Jonny’s hope for future wage-earning would be thoroughly trashed. 

The Transformation to Competitive Employment Act (TCEA) (S. 260 and H.R. 873) would, over a period of six years, completely phase out disability-specific sub-minimum wage programs, even those serving the severely cognitively disabled who would otherwise be unable to access work. The bill would also provide a grant program to help expand capacity for those capable of achieving competitive employment.

Listen, the TCEA is in part addressing an important issue. Section 14(c) of the Fair Labor Standards Act, which authorizes employers to pay specially tailored wages to employees with disabilities in certain restricted circumstances, has at times been abused by bad-apple employers to pay disabled employees less than they were worth. Though affecting a small portion of the 14(c) programs, the exploitation was indeed something to be remedied. The TCEA offers some needed fixes to our labor system by ensuring these workers have a way to move out of 14(c)  programs and into competitive integrated employment. Amen to this wage justice.

But for the more impaired portion of the disability community, the 14(c) program fills an urgent need. It is simply inconceivable that a commercial employer would willingly hire someone like Jonny, who cannot talk, read, or write, and at best can follow only one-step directions, over a non disabled person whose productivity is ten times greater and who is unlikely to chew the furniture.

Some disability advocates are telling lawmakers that all people no matter how disabled can find integrated, competitive employment. Please. Just stop. I don’t know what these advocates have been smoking to spout such fantasies, but clearly they are not spending much time with guys like mine, nor have they ever tried to employ them.

So it should be clear to any fair-minded person that the TCEA risks throwing the jobs baby out with the social justice bathwater. Beyond its preposterous assumption that all disabilities are created equal, let’s look at some other problems with the bill: 

In addition to the TCEA, the Raise the Wage Act, H.R. 582 and S.150, also contains provisions to close 14(c) options. It is also sponsored by Bobby Scott (D-VA). This bill is tied to the movement to raise the federal minimum wage, so it has many more sponsors (currently 204, versus 20 for the TCEA).

  • The TCEA ignores the staggering increase in severe autism and what should be a clear imperative to create vastly more, not fewer, options for day programing and supported forms of employment. In California, the population of adults with developmental disability type of autism will grow nearly five-fold over the next 20 years. Only a small portion of these adults can achieve competitive employment. The rest? We need to maximize their options, including work that pays special wages based on less-than-competitive productivity. 

  • The TCEA dodges the obvious fact that subminimum wage work is but one benefit accruing to the significantly disabled clients. Work programs serving adults with significant intellectual disabilities like Jonny are typically run by mission-driven, not profit-driven, nonprofit organizations. These adults are typically also beneficiaries of supervision, therapeutic care, training, and social and recreational programs funded and provided by the nonprofits. It can be very costly to serve these disabled individuals: they often require high staff ratios, intensive supervision, crisis intervention and ongoing coaching. A standard job supervisor is unlikely to treat seizures, change diapers, or handle getting punched or scratched, to put it mildly. The extremely valuable, though non-monetary, therapeutic dimensions should be considered before over-simplistically labeling subminimum wages as discriminatory.

  • 14(c) programs serving the significantly intellectually disabled provide a protected form of employment unavailable in the free market. “It’s not an employer-employee relationship,” explains Tracey Brown-May, Director of Advocacy, Board, and Government Relations at Opportunity Village in Las Vegas. “People employed here who are earning 14(c) wages are not at risk of being fired.” In other words, the employee’s needs comes first, and profitability is not the prime endpoint. The nonprofit work is typically tailored to the particular skillset of the worker, a customization unavailable in the free labor market where individuals are expected to conform to pre-established performance standards. Disability advocates often accuse 14(c) wage program of exploiting or abusing their disabled workers, but at least for severely challenged adults, the opposite is almost always true— the programs often protect clients from exploitation and abuse by offering a protected form of employment.

  • No person with a disability is forced into 14(c) work, and wages are set carefully. The provision authorizes employers to pay specially tailored wages to employees with disabilities only when the employer can demonstrate, through an exacting certification process, that the worker’s productivity is compromised by the disability. The certification requires a careful calculation of fair wages based on productivity and continuous re-evaluation of the employee’s capacities to ensure wages keep pace with skills. And of course the worker would also need to agree to the wage. Programs must be re-certified every two years by the Department of Labor, which has the duty to identify and remedy any abuse or exploitation it finds during its reviews. 

  • Most workers with disabilities, for example physical disabilities, are already in the competitive market. Retaining a 14(c) option does nothing to negate or undermine expansion of competitive employment for those capable of that option. Both work options can and should peacefully coexist to serve a dramatically diverse disability population. As Harris Capps, the father Matthew, who loves his job in a Ohio work center, asked, "Why do higher functioning disabled persons and their lobbying organizations want to deny lower functioning persons, the right to work? If a higher functioning individual is able to get a job providing a mandated minimum wage, surely, they already have the minimum wage law in effect to protect them.”

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Loves his job: Matthew Capps loves nothing more than to report for work. But the TCEA is putting his job, and thousands of others, at risk.

  • Not supported by data. Data from states that have closed their sheltered workshops do not necessarily demonstrate a correlated increase in competitive, minimum-wage employment. In Maine, two-thirds of former workshop participants are now unemployed. Those adults with I/DD who do have jobs work only an average of twelve hours a week, which is the lowest average in the country. In Washington state, more than 80% of those with severe cognitive impairments remain unemployed. Vermont reports fewer adults with I/DD in supported employment since closing its sheltered workshops in 2002. In short, when sheltered workshops close, participants often end up idle at home, lonely and unemployed, or if they work at all, with decreased job hours and decreased total wages. The other alternative — volunteer work in the community — can sometimes provide community, engagement and pride, but in reality, volunteering for commercial employers often suffers the same challenge as competitive employment: that option does not offer the support needed.

Every family affected by severe autism should know about the TCEA and oppose it in its current form. While federal policy should certainly promote opportunities for competitive employment when possible, guess what — our pizza can have both pepperoni and mushrooms. Let’s expand capacity for competitive wages using the planned federal grants, while also retaining vital options for our severely disabled loved ones.

As Opportunity Village’s Brown-May says, if 14(c) is phased out, “employment opportunities will go away for people with a very significant level of disability. They are the people who will get hurt.”

Jill Escher is President of the National Council on Severe Autism, President of Autism Society San Francisco Bay Area, and founder of the Escher Fund for Autism. She is the mother of two children disabled by nonverbal forms of autism.

See NCSA Position Statement on Vocational Options: ncsautism.org/vocational-options


A Federal Policy Victory for Adults with Autism

A 2014 Medicaid guidance, now withdrawn, had the effect of substantially restricting program and residential choices for autistic adults precisely at a time of surging need for new options.

 
Amy Lutz, now NCSA’s secretary, discussed the problems with the former Medicaid guidance in the article,  Who Decides Where Autistic Adults Live?  published in  The Atlantic .

Amy Lutz, now NCSA’s secretary, discussed the problems with the former Medicaid guidance in the article, Who Decides Where Autistic Adults Live? published in The Atlantic.

 

We are pleased to inform you of a significant policy victory for adults with autism.

The surging population of young adults disabled by autism is creating unprecedented demand for a wide spectrum of supportive programs and residential options across all our communities. 

NCSA will update this page soon with more details about the CMS guidance.

Together for Choice press release here

Many of these options will be funded in part through federal “Medicaid HCBS waiver” dollars. This is federal money designed to subsidize services in one’s own home or one’s own community, and outside of state institutions.

In 2014, Medicaid’s administrators, the Center for Medicare & Medicaid Services (CMS), surprised the developmental disability community by issuing a sub-regulatory guidance that has had the effect of substantially restricting program and residential options for adults with autism and other DDs. The guidance targeted farmsteads, disability-specific communities, residential schools, campus models and other intentional communities as “isolating,” and therefore presumptively noncompliant with the CMS regulations, a presumption that could be overcome only after an opaque process called “heightened scrutiny.”

Fortunately for our community, this past Friday CMS issued new HCBS guidance which supersedes the previous guidance. You can view the new policy here, which is written in FAQ form. Advocates spoke with CMS staff on Friday and confirmed the following:

  • Settings described in previous guidance are no longer presumed institutional nor isolating and will no longer be forced to go through heightened scrutiny if the state determines the setting is compliant with the HCBS Final Rule.

  • Consumer-controlled settings are presumed compliant.

  • Settings previously submitted for heightened scrutiny may no longer need to go through the heightened scrutiny process if the state determines it is compliant or can become compliant by July 2020.

  • The role of an individual’s person-centered plan is paramount in guiding services, their home preferences, and access to the greater community.

  • The new guidance is outcome-oriented and focuses on the setting’s facilitation of community engagement as described in one’s person-centered plan.

This welcome development will help our community mobilize as many options as possible for our burgeoning and incredibly diverse population disabled with autism. We will update this page soon with additional information, but in the meantime for background information please see:

  •  “You Can Choose Where You Want to Live... Unless You Have Autism" by Jill Escher. 

    NCSA thanks all the autism and disability advocates who pressed for common sense, person-centered policy changes, and who fought draconian rules that would have privileged a segment of the disability community at the expense of others, particularly those in need of strong supports. 

Sensory overload, water stims and tantrums: Autism moments captured in poetry

This evocative poetry, capturing moments familiar to many autism families, ping pongs its perspective, shifting from mother to autistic child, almost as if the duo were a single entity.

Writer Tom Graham is a 38 year-old autistic man who spent most of his school years in special education, diagnosed with a speech and language disorder/learning disability, before being re-diagnosed with Autism Spectrum Disorder. He spent five years of his adult life as a psychiatric inpatient and currently resides in supported accommodation in the southwest of England. We hope you enjoy his work. —The editors

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Stock photo

 

Enigma

Soulful eyes that rarely connect
nevertheless acutely aware.
A tangled mop of curly brown hair
grooming is so unfair.

Running in circles
a hand raised
fingers splayed
in front of the eyes.

The purpose of which
one can only guess
to make it less
filtering out the mess.

#Autistic

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Stock photo

 

Brotherhood

If it happens to be wet
your interest is a safe bet
it starts as a trickle
soon I'll be in a pickle.

Do I get in your way
or let you play
Mother will be cross
it's her loss.

Witnessing your joy
it's worth the ploy
as the taps run
it's all good fun.

Keeping a lookout
while you scream and shout
the floor’s a lake
you're killing me, Jake.

Scrambling for the mop
that's your lot
you're bound to resist
she's gonna be pissed.

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Stock photo

 

Overload

A hand to the mouth
it's all gone south
he takes a bite
trying to set things right.

Chewing his flesh
making a horrible mess
it's a cry for help
he's ready to melt.

A trickle of blood
becomes a flood
it’s gone too far
there’ll be a scar.

Time to intervene
makes me feel mean
he begins to scream
it's like a bad dream.

Trying to get a grip
everything’s gone to shit
love will out
that's what it's all about.

Tom can be contacted via his Twitter account, @serverusautismo.

All poems ©2019 Tom Graham

I’m 80 Years Old and There’s No Post-Mom Transition Plan for My Severely Autistic Son

Medicaid waivers are a godsend for many autistic adults, but who oversees complex care after a parent dies?

By Martha Moyer

Martha Moyer Pic.png

I am 80 years old and have a son, Seth, age 45 who has severe autism. I was one of the first in Texas to have advocated for the Medicaid Home and Community Based Services (HCBS) waiver which has given him the opportunity to receive care in his own apartment, where he has lived since age 22. The HCBS waiver is a lifesaver for my son, because before that, federal money would only pay for care in a state institution.

Seth has autism, intellectual disability, mental health issues, OCD, and paralyzed bowels due to neglect he received in an institution. He also has minimal language ability. He stands over six feet tall and weighs 240 pounds, is quite unstable and has been in two mental hospitals in the past. When he gets angry he swings at anything in view including pictures, he breaks glasses and even throws furniture, which means no fancy house decorations for me because he comes home on two weekends a month. Being so volatile also means his own home has few decorations. But thanks to his caregiver Seth goes out in the community daily and goes to special events such as dances and parties for the disabled.  

When we arrived in Texas around 1982, the funding for I/DD services outside of state institutions was minimal. But when news about my son got in the newspaper telling about his violence, he was granted state residential care funds. Shortly after, he ended up in a private institution here in San Antonio funded by the school district. I could not risk having my son lose the state funds, so I had the commissioner set aside the funds for when he aged out of the program. After we secured funding for his own apartment, the state used the funds to supplement HCBS federal money to pay for the support services. 

While HCBS has been a godsend in many ways we need to be honest and acknowledge that HCBS is not set up for complex individuals like Seth.

The biggest problem is that while he should not live in a state institution, he still needs a comprehensive approach to care. You can’t just put him in an apartment with a caregiver. Someone needs to set up and manage all parts of his program — the person-centered plan and quarterly review of services, finding and maintaining and paying for housing, including Section 8 funds, doing the staffing and training and regular supervision, behavior management, and dealing with medical needs, bookkeeping and payroll — and then continuously manage all these moving parts and all the paperwork.

While I’m alive and functioning I am the program administrator. And an 80 year-old friend volunteers to do the billing. I can’t say enough for my friend’s generosity, but I doubt anyone will take our places for free. 

The second big problem is crisis intervention. For example, last night the city water company was working on fixing a leak so they shut off all water to the building where my son lives. Like so many people with autism he went into a great meltdown because water flowing through his hands is his thrill. He tried to kick the caregiver, destroyed many of his items, and couldn’t be calmed. The caregiver had to call the police, who took over an hour to get there, and when they did appear they took him down to the police car to give the caregiver a break. The water didn’t come on so they took him to a psychiatric hospital and dumped him there. When an adult with severe autism has a meltdown it shouldn’t come to this, but HCBS is fragmented without the on-call help that is often needed.

A third issue with HCBS is that costs for complex medical care are not covered. My son needs a procedure called the PIE, pulsated irrigated evacuation system, that keeps him alive. His bowels are paralyzed and nothing will make them work. I can’t get this procedure covered by any of his services including Medicaid because there is no code for it. We pay over $500 a month out of other funds for the PIE supplies.

One bright spot is our use of what is called a Microboard, which is basically a very small corporation set up to provide care and funding for a disabled person. When I am not around anymore my son’s microboard can help see that my son is not “thrown away” and that he receives proper care. 

But at 80 years old I worry about what will happen to my son when I die. The alternative to HCBS is either a state institution or group home which I fear would kill him. His needs are such that none of the group homes would want him. The amount for the PIE is one big reason no group home wants to care for him. Group homes also don’t want to deal with the violence.

I am fearful about re-institutionalization because I have a friend whose violent son with autism ended up in an institution and staff beat him until he never walked again and ended up in a vegetative state. She had to fight for the state to allow her to sue. Texas legislators told her she couldn’t sue because the state had sovereign immunity. She was finally compensated.

My point is that the HCBS program needs to be developed to address the complicated needs of adults with severe autism. We need package programs offering a lot more supervision and management than is currently possible. The system is very fragmented and depends on parent managers. And we have an expiration date. And parents never know an expiration time. And in some cases there are no relatives left or able to help.

— Martha Moyer lives in San Antonio, Texas.

[Editor’s note: Medicaid HCBS waivers are implemented differently in each state, and some issues discussed in this blogpost are specific to Texas. Texas is also home to the longest HCBS waiver waitlist in the country, with more than 150,000 people awaiting waiver services.]