"We are prepared to go to war" to save our disabled kids’ jobs

As the “disability rights” movement pursues the cruel elimination of non-competitive employment programs for the severely disabled, a father makes it clear: we cannot allow this economic and humanitarian disaster to occur.

Scott Schwartz, son of attorney Ted Schwartz, author of this letter.

Scott Schwartz, son of attorney Ted Schwartz, author of this letter.

Mr. Norman Lorentz
Board Chair
SourceAmerica*

Dear Mr. Lorentz:

I am a Pennsylvania Trial Lawyer and Past President of the Pennsylvania Trial Lawyers Association (now PAAJ), and Past Governor of the Association of Trial Lawyers of America (now AAJ). More relevantly, I am the father of Scott Schwartz, now 44 years old and one of the first individuals diagnosed with Fragile X Syndrome, a genetically inherited form of mental retardation which rivals Downs as the most prevalent ID cause worldwide.

Scott graduated from his Special Needs School 23 years ago and tried competitive employment unsuccessfully … on 5 different occasions. He has thrived in his Work Center, Associated Production Services, for 22 consecutive years. His annual ISP has carefully studied his progress, or lack thereof, and each time concluded that a Work Center would be the optimum place for him vocationally. AT NO TIME WAS A RECOMMENDATION MADE FOR SCOTT TO ENTER COMPETITIVE EMPLOYMENT.

There are tens of thousands of Scotts around the United States, who are happy and content with their employment in a Work Center. In addition, Moms and Dads of these thousands of individuals, in addition to the other everyday stresses that they are currently undergoing, are Extremely Anxious over the above two bills which, if enacted, would basically put Work Centers out of business. Permit me, then, to put up a mirror in front of you and provide you with a Point by Point scenario of the Economic, Psychological and Spiritual Chaos the passage of this legislation would cause to each and every family unit of an ID individual if Section 14 (c) of the Fair Labor Standards Act were repealed by the passage of the above bills.

1. ID individuals at Work Centers (formerly called Sheltered Workshops) get paid by piecework. They stuff soda boxes, they place cough drop bags in boxes, they screw tabs into S hooks, and so on. The Work Centers simply cannot afford to pay these workers minimum wage. Moreover, it is NOT about the money for these workers. It is about pride, accomplishment and self esteem, the ability to get up in the morning, go to work, and then come home and brag that they accomplished something that day.

2. If 14 (c) is enacted, WC's will not be able to pay minimum wage because of their revenue stream, and will go out of business. This is a Given.

3. ID individuals who formerly worked in this setting will be forced either to sit at home or to work in some menial job in the Community, with or without a job coach, for a couple of hours each day. Then they will be transported back home after 2 or 3 hours of work for the rest of the day.

4. Since in many cases, these ID people are not able to care for themselves, who will take care of them, feed them and give them medication while Mom and Dad are earning a living to keep the family afloat? The proposed Legislation does not answer that question. It never will.

5. In the above event, one of two scenarios will occur: First, Mom or Dad or both will have to quit their job to take care of their child, or they will continue to work and hire a worker to care for the ID person. Either way will cause economic disaster to the family, and eventually to the States in the form of Welfare payments. Have you thought through all of these ramifications before you made your endorsement of the repeal of 14 (c)? I bet not.

Instead, in your letter to your Board of Directors, you provide so-called "reasoning" for your decision. Let us examine these reasons, point by point:

“You presume that EVERY ID individual is qualified to work in Community Employment. That is NOT SO. ”

1. "14 (c) has created significant barriers to the organization in terms of advancing legislative goals, creating strategic partnerships, and increasing employment opportunities within the AbilityOne program." For whom will this legislation increase employment opportunities? You presume that EVERY ID individual is qualified to work in Community Employment. That is NOT SO. Does this legislation contain one bit of testing or Evaluative Criteria to determine who is or who is not qualified to work in a Community Setting? It does not. How then can you make such uninformed statements without obtaining those facts?

2. "A growing number of key decision makers and stakeholders view 14 (c) as a discriminatory labor practice, causing people with disabilities to be isolated, segregated and lacking in upward mobility".....Really? How Trumpian of you to say that. You might want to know that The United States Commission on Civil Rights (USCCR) issued a report on this subject; parents and other influential people were PREVENTED from issuing a minority or opposition report, espousing the above points. Does that sound to you like "overwhelming opposition" to 14 (c)? I can tell you personally that overwhelming opposition has amassed to your position from various Special Needs, Medical, Law, and Psychological Community Professionals. I advise you and your Board to tread lightly before you make such irresponsible statements that lack factual foundation. Americans are not stupid. They can see through Bluster. They can see through an argument that has no factual basis. Does that sound vaguely familiar after what all of us just went through? Fact and Truth prevailed then. It will prevail now. You offer no factual basis for your opinion.

3. Further, your "discriminatory labor practice" argument has two answers:

A. WC's are not "Sweatshops", plain and simple, as many legislators and your "Key" people have obviously wrongly opined. Indeed, they are honorable workplaces, with all employees under constant supervision. Worktimes are usually from 10 am to 3 p4m with an hour for lunch. Socialization at lunch between employees is encouraged, which is vital. Weekly wages are between $60.00 and $200.00. At ISP conferences, employees are asked if they want to stay in the WC or enter into the Community. CHOICE is the watchword. All conferences are accompanied by a 25 to 30 page report, which codifies the events at the conference. By the way, I would encourage you to visit a WC. I promise you will be enlightened.

B. Your position about discrimination is unconstitutional, in light of the ID individual's choice to remain at the WC. Think about it. What you are supporting is de facto mandating that every ID individual work in a Community Setting without an equal mandate of every Employer to accept ALL ID Individuals for employment and mandate specific care programs (training, distribution of meds during the day, eating facilities, etc). Sounds like a denial of 4th Amendment Equal Protections to me … how about you?

You should also know that the Moms and Dads of this world who have ID individuals are not taking this lying down. We plan a massive Social Media campaign against any and all groups who oppose the concept of Choice of Workplace for our Children, and we will be sure to let those businesses with whom you are affiliated and those others who are in favor of the repeal of 14 (c) know of your position, and the devastation it will cause if adopted. In the Spring, a number of us will be traveling to Washington with our children to see the House and Senate members. We would be pleased to pay you a visit.

At the same time, we stand ready,willing and able to work with you, Senator Bobby Casey (yes I know him for a long long time), and President Elect Joe Biden (yes, when I was active in ATLA, we used to ride to DC together on the Amtrak Train), and any other individuals to craft meaningful positions on this legislation which would be a win win for everyone. Much of our position is set forth above. But if you and your Board, or anyone else for that matter, insist on fighting us, we are prepared to go to war. Of particular note is the transition time expressed in those bills....Does anyone really think that after 6 years or even after 10 years, the individual's disability will magically go away, sufficient for that person to enter Community Employment? Again, sounds like the President declaring that COVID 19 was a hoax, and that it would magically disappear … How did that work out for you and your Board?

I await your kind response. I know your Board Vote is January 13th. Please send this email to all your Board Members; if possible, I would like to be part of the Zoom call. I also await the response of Senator Casey and Senator Toomey, as well as the two individuals listed in the caption who crafted the Biden position on this matter.

Ted Schwartz

Ted Schwartz is a Pennsylvania Trial Lawyer and Past President of the Pennsylvania Trial Lawyers Association, Past Governor of the Association of Trial Lawyers of America, and the father of a 44 year-old son with Fragile X syndrome.

Footnote: SourceAmerica is a nonprofit that helps businesses fulfill contract requirements with work done by employees with high-functioning disabilities. The board of SourceAmerica, one of two U.S. central nonprofits designated in the Javits-Wagner-O’Day Act to support nonprofit agencies participating in the AbilityOne Program, has adopted a policy calling for the elimination of Section 14(c) sub-minimum wage certificates. It has never explained how it expects those with severe intellectual, functional and.or behavioral disabilities who have never exhibited any capacity for competitive employment will find work.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

Jay from Autism Hood Tells It Like It Is

The no-BS autism dad continues to battle nonsense in the Twitterverse with nuggets of personal wisdom. Enjoy some samples, and follow him on Twitter @jayhood73

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We featured devoted single dad, “Hood Jay” in our blog last year. A prolific Tweeter, he never shies away from telling his truth, while always keeping it positive for his son Sheamus.

"Every single facility denied my daughter admission"

A mother enters a world of utter madness seeking nonexistent “community supports.” She tells her story — and suggests some solutions.

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By Jacquelyne Kancir

In a home in an all-American subdivision in middle Tennessee, huge holes are kicked into the bedroom walls. The neighbors wake to loud wailing all hours of the night. The dogs having been hit before, know to exit the room as soon as they hear the energy rise in anyone's voice. Mom is bruised on her legs and arms, her scalp still sore from her hair being pulled the day before. The family's 17 year-old daughter is bruised, too, mainly on her arms, where she bites them in fits of rage, and she often says her foot hurts, likely so, after all the kicking she's done of walls, door jams, people, tables, dogs, cupboards, or anything else she can find in her path. Two nights ago, the respite worker stopped the daughter from jumping off the back deck balcony.

This might sound like a story about domestic violence, but it's not. It's a psychiatric medical crisis of an adolescent who has a severe genetic disorder called SYNGAP1, which caused Lennox-Gastaut Syndrome (intractable epilepsy), severe autism, profound intellectual disability, hyptonia and neuromuscular disorder, sleep disturbances, swallowing disorder, and yes, severe aggressive episodes.

This family is in crisis. This isn't the first time. Every year around the same time of year, they've met the same circumstances. This family is my family.

Because it can appear from the outside like a criminal domestic dispute, families are reluctant to call for help. In our city, you cannot get EMS response without police escort for these calls, even if you refuse the police escort. Recently, one of our providers reached out to a local officer proactively to discuss the situation in our home and what an appropriate response would look like if we had to call for help. He asked why we hadn't thought of admitting her somewhere. (I'll get to that next.) It just goes to show that this isn't the police's fault when they treat these situations like criminal disputes because no one has filled them in on the canyon size gap in services to this demographic. Even the police believe we have someone, somewhere to call for help if it's truly medical.

Two years ago, we transferred her out of state to Georgia in a desperate attempt for stabilization to a center recommended by crisis support. At that center, she was bitten, hit, pushed down, smacked, left unattended at least an hour, and kicked by other patients. We had to work diligently to have our daughter released as soon as we realized the advertised ratio of 1 staff to 2 patients was in reality 1:8, that it was a co-ed unit. Our daughter was placed on a unit with adult size males who had just as much if not more raw explosive aggression as she did. The staff could not keep the patients safe from each other on those ratios. It was one more let down in a long line of trying to find solutions for our daughter.

Last year, our daughter shattered a 55" tv in a rage. She's head-butted me so hard I've had to eat soft foods for days. The doctors and I called every facility in the state of Tennessee last year this time of year trying to find an acute stabilization for the child in crisis. Every single one denied admission.

◦ Has to be seizure free 30 days. (Most kids with LGS never go 30 days seizure free in their lives. Their seizures are managed, though, as hers are.)

◦ Has to have an IQ above 50 or even 65. (Hers is <20)

◦ Must not be dependent in ADLs (She needs assistance toileting, bathing, brushing teeth, dressing, eating, and at times, walking/transferring)

◦ Must have the cognitive capacity to reasonably keep herself safe from other patients. (Isn't that what staff is for?)

Tennessee does have psychiatric units, even adolescent psychiatric units, but those are suited for substance abuse, sexual abuse, depression, people who are otherwise healthy and functioning well. Tennessee does not have a single bed in a single facility set to allow treatment for someone with complex medical needs, someone with both psychiatric and physical medical needs, a neurobehavioral psychiatric stabilization unit. Not one.

Parents are told over and over — by doctors with a full 24/7 staff of medically trained people, fully stocked pharmacies on site inside facilities set up with coded doors to prevent elopment, and padded walls to prevent injury — that they aren't equipped to handle their child. So parents with none of those things, maybe even with just a high school education or not even that, with no resources, are told to just "keep doing the best job you can. We're sorry. We can't help you."

So the home gets more holes. The neighbors hear more wails. The siblings and parents become more traumatized. The disabled person who desperately needs medical treatment continues to decline in emotional dysregulation and escalates the aggression more and more.

You may be thinking, there must be something for this demographic, right? Tennessee claims there is. They call it the Employment and Community First waiver (ECF). ECF on paper looks very promising, toting of in-home and in-community support, parent training, respite, home modifications, assistive technology, all kinds of things. However, ECF has a significantly inadequate provider network. Parents sit on the program approved for years without a single hour of support because "sorry, we're still looking for providers." Most disturbing, when the year runs out, and the allotted budget hasn't been spent because the family sat another year with "no providers available," that money doesn't roll over to the client the following year. It gets to "roll into funds". What funds? No one seems to have a concrete answer they're willing to share with me on that. Sounds like an audit is needed to ensure there aren't people profiting off leaving these families in crisis. As it stands, if they get through a year with a client allotted $15,000 in a budget, but only spend say $5,000 on other things, they get to roll that $10,000 somewhere else, wherever else, it's not to the client. Times that by thousands that are on the ECF waiver, and you are looking at millions of dollars that were intended to help to prevent crises like the one we're in just "rolled into funds" somwhere else, not to the client.

As it stands right now, we're treading water to survive. For months our nursing agency was only able to staff 8 of the 20 hours a week we are approved for CNA coverage. They did just recently hire a second CNA, so hopefully that lasts. The doctor ordered 40 hours. The insurance company only approved 20. ECF does not allow any CNA coverage on their waiver, only uncertified personal attendants. CNA coverage has to go through insurance. My daughter's medical complexity requires no less than CNA-level care. We just received another letter of many from ECF that our community integration hours are approved but it "may take longer than we'd like" to get it started since they are "still looking for providers".

Our home modifications were "approved" but as assistive tech, not home mods. Home modifications is a separate budget ($6,000 per project, $10,000 per year, $20,000 per lifetime), not to be taken from the annual $15,000 budget. Assistive tech is in the annual budget. So if they get to use almost $6,000 to install mats on her walls so she no longer kicks holes in them and claim it is assistive tech, then when I continue to complain she hasn't received a single hour of community integration, they get to say, "Oh sorry, you used up your budget on the mats."

Can anyone out there in internet land explain to me how stable mats screwed into a wall that don't light up, don't make a sound, do nothing but stand there are technology assisting her? Assisting her in what? What exactly is she going to be doing more of with mats? Assistive tech is actually things like her AAC communication device, a propriety device that talks for her, something we had to go through insurance for, not ECF, because it would have been beyond her budget in ECF. No, permanent mats installed on a wall is a home modification. Period. So, we still don't have mats on the walls.

They denied increasing space in the bathroom for us to successfully assist her toileting. The CNAs and I are still squeezing into a tight space. They claimed that was a "home remodel". It would actually devalue my home, not improve it, and is solely to make caring for her easier. Yet, hey, if we wanted them to remove all the walls and the tub, they'd put in a walk in shower for us. Huh? She can't stand some days. We have to use the tub still. I don't want a more expensive walk-in shower. I wanted space to toilet her. This is the madness parents face trying to even use the ECF waiver which is touted as our saving grace. It's anything but.

And when you call them on this kind of garbage they dish out, you're just labeled the difficult parent. Well, I guess I could be called worse things. Yes, yes I am difficult because I'm not just going to roll over and stay silent while my child is in crisis over and over because the services she's supposed to have so she can live a safe quality life are never filled. If that makes me difficult, call me Queen Difficult because I will never stop this fight until she has the services she needs. She doesn't deserve this. We don't deserve this. Our children don't deserve this. And there are people making salaries in positions with missions to make it so we don't have to live this kind of life. Do your job.

𝐒𝐎𝐋𝐔𝐓𝐈𝐎𝐍𝐒

1. Develop a national code system for police response. (Like "Code J") One that would let officers know that they are responding to someone who is developmentally delayed in psychiatric distress, that it is not a criminal domestic dispute, but that they are to allow EMTs in to do their job and administer medication to sedate the patient, that the patient may not respond to commands, not because they are resisting arrest, but because they are cognitively incapable of understanding nor do they have the verbal ability to respond reliably. They are not to be questioned, simply treated by EMTs and transported to the hospital. Police are only there to keep EMTs safe and may use force only up to restraining the patient, nothing lethal. Because many of these patients may have pace makers or other complex medical needs, stun guns should not be used. Additionally, police should be made aware of this major gap in services so they understand coming into the situation that the person may be in need of hospital admission but there are no hospitals willing to accept the patient. Employ a social worker on call (literally on a call, not needed in person) to help advise police in deescalating the situation if necessary.

2. Parents and in-home CNA staff all should have free CPI training made available to them through the ECF waiver. I've repeatedly asked for this, but they've "been unable to find anything". Another nugget written on paper I should receive but don't. Crisis Prevention Institute courses provide training on effective verbal deescalation and safe/humane restraining methods. Nursing agencies need to put in place an SOP for when a client becomes aggressive while staff is present. Currently staff have no SOP.

3. Wages need to be raised for direct support / CNA who work with severe psychiatric cases. Use the same model as nursing homes do for memory care units. Pay them a higher initial wage for taking the harder cases. They should be paid no less than $15/hr. Many are paid $8-12 currently. They can make more started at White Castle flipping burgers. This is a disgrace. They also need premium health coverage, as this is a job hazard. They need access to chiropractors, physical therapists, and even counselors to help cope with the stress of their job. If they are in-home providers, they should be paid mileage also. Doing these things will greatly improve the adequacy of the provider network.

4. Increase the budgets for the waiver. Tennessee has deinstitutionalized. There are no facilities to place those deemed to need facility-level care. Instead, they are supposed to be receiving equal or better than care they'd have received in an institution but in their homes and communities. The national average for in home health aide per month is $4,576, the national average per month of adult day health care is $1,603/month, according to a Genworth study. Thus no level's budget should be less than that x12, which is (4576+1603)x12=$74,148. That's what is needed to provide facility-level care in the home and community.

5. Establish ratios. Just as a day care center may have a ratio of 1:4, or a hospital may have a ratio of 1:7, establish ratios for ECF. The provider network MUST maintain at least 1 provider per mild-moderate client and must maintain at least 2 providers per severe client. Initiate mandating, just as a hospital would. Can you imagine going to the hospital and them saying, "Sorry, no providers today, you're going to have to set that leg yourself and stitch yourself up,"? Not only ensure that each client is staffed at all hours approved, but increase staff to two per client for the severe cases. My daughter is a two person job. I use my respite hours not to go grab a drank with friends. I use it to have a second set of hands to help me even get her in the shower. Presently, we are limited to one staff only...if you can ever even find that staffed.

6. Streamline the home modification process. Bring in experts in the field to train ECF on what are appropriate home modifications for this demographic, beyond their go-to walk in shower. ECF should have a list of things that are easy to have approved because they have been deemed useful and an improvement to independence and/or safety, such as guardian angel bars for windows, coded locks for exits, padded walls, etc. ECF should have a list they provide parents of contractors familiar with the process so they can call for bids easily. ECF should have a list of Occupational Therapists willing to come to the home to do the evaluation to determine what's needed. Stop asking parents, "Well what kinds of things do you want?" This isn't about what we want. It's about what the client needs. Parents aren't OTs. That's for an OT to decide. Let me repeat that. That's for an OT to decide. Once an OT submits a report, insurance companies shouldn't then just rip it to shreds and determine it isn't needed. Once a doctor, many doctors, renown doctors, order 40 hours a week of care is needed, insurance companies shouldn't just get to rip it to shreds and say 20 is enough.

7. Develop neurobehavioral psychiatric units, ones for adolescents and ones for adults, at least three spread out in the state of TN for acute crisis stabilization.

8. Mandatory Police Force Training. Once a year, every person in blue should be required to attend a training session that educates them on current resources (and the lack thereof) for the patients with the most severe complex cases. Many officers currently DO NOT KNOW that we can't just call to put her in a treatment center. They DO NOT KNOW the state has left these clients out flailing with no support options. So they come into a situation thinking it must be domestic because if it was medical, the parents surely would have put the client in a hospital already.

Jacquelyne Kancir is the mother of a 17-year-old daughter with the genetic disorder SYNGAP-1. You can see a recent interview with her at Voice for Joshua here, and read her Facebook blog, “What we need yesterday.”

Life With My Autistic Daughter Has Left Me Bruised, Bitten and Traumatized

We have tried everything. What would you do in my shoes?

Bites have left bruises all over M’s mother, including her legs.

Bites have left bruises all over M’s mother, including her legs.

By Carrie W

We are going through hell.

I am hiding from my severely autistic daughter, M. She is in my room, where she is most comforted, however, I can’t risk being with her, she has attacked me, bit me, countless times, and is ready for more.

The other day, I fell asleep with the door unlocked, exhausted from the trauma and aggression. M came in, and sat on the bed. I immediately jumped up to make sure she was not going to bite or grab me. I quickly cleared everything off the nightstand knowing she would move everything the floor. Surfaces need to be clean for her when her OCD is so out of control. 

So I left the room. I just wanted to go down to the kitchen and get a ginger ale. But she followed me and immediately grabbed her shoes, signaling she wanted to go for a ride. I couldn’t take her. I would have, but was feeling nauseated. This is NOT good. We know what will happen next. 

Will she launch into another rage? From here I can’t get safely to a room to lock a door. She is so strong and injures us severely when she bites. Thankfully, she goes back up to my room. And I quickly go back into hers, and lock the door. This is NO WAY TO LIVE IN YOUR OWN HOUSE!!!!

Her father ends up taking her on a ride. I text him asking him to try taking her to the playground. Maybe she can run around and get her energy out. But the ride is brief because M doesn’t want to go when they arrive. She waves her hand in a certain way which means she’s irritated and to move on quickly. They arrive back home after the drive-through at McDonalds. Okay good, I’m thinking to myself, she’ll be okay. She went on a car ride. But she is not okay. She has another aggressive episode. 

From downstairs I hear loud slamming and I know something is wrong. My heart is pounding. I don’t know what to do. I hear footsteps running up the hallway and a door slam. Then I hear M trying to pull my door open furiously. She’s very angry. I get a text to stay in the room. My son receives a text to stay in his. And for the first time, her father has now locked himself in the bathroom. This is now our safety plan. 

We then hear our dog Stella bark in a very angry manner. This startles all of us. But mostly my son, who is now crying. He opens the door worried that M has hurt the dog. His dad is trying to calm him, to get him to stop crying, because this makes my daughter’s aggression worse. We quickly bring Stella in with me and we all go back to our rooms, locking the doors. We wait. Finally, we don’t hear anything and her dad goes to check on her. He and my son are furious with me. Why did I let her see me? Was this the trigger? I feel terrible, and if I could jump out the window and run away from this, I would. But I can’t. 

The good news is that we have found a residential placement for M. But it’s more than three weeks before she can move in and we don’t know how we will survive until then. The trauma has taken its toll. We are all walking on eggshells, not knowing when she will have another meltdown. 

M’s meltdowns are severe. First responders, ER staff, hospital staff have all witnessed her rage episodes. When she has these attacks she is a danger to herself and to others. She will bite and attack with sheer rage. And if she’s overwhelmed with this, she will also bite herself. She stopped these self-injurious behaviors months ago when she was at a group home. But now she has started injuring herself again. I am so frustrated and upset for her. 

Do I leave and go to a hotel like I’ve done before? No, I can’t do that. At this point, her father cannot be alone without my help. He now has motocross protective wear, like body armor, to protect himself. I do not do much in the bedroom with the door locked, but I can at least call 911 if he needs help.

Before you judge me, I ask, what would you do in our shoes? And are you willing to come to our house to become a caregiver for our daughter?

Carrie’s husband’s new protective gear, as recommended by a police officer.

Carrie’s husband’s new protective gear, as recommended by a police officer.

My heart breaks for M, but we cannot do this alone without more assistance. But, for at least now, there is none. And we won’t put her through another Emergency Room visit only to hear once again, “She can’t be admitted to inpatient psych because she has autism.” She has already been discharged from a program by a system that works against the families, instead of for them.

My heart breaks for my son as well to be living his childhood and adolescence this way. 

I am tired. I am drained. I want to fight this and send email and letters to all the people in government and county who look the other way. I will fight for more crisis care centers. But right now, at this very moment, I am overwhelmed. We are just trying to get through another day. One day closer to her being admitted to the program. One day closer to getting her help she needs. And the help we will all need after going through this.

Carrie W is a pseudonym for the mother of two children, one of whom has severe autism.

For a Severely Autistic Young Man, a Life of Purpose and True Inclusion at an All-Abilities Farm

“In the city or near cars he has to be closely supervised and monitored. On the farm he walks far ahead and makes his way on ground that is safe and kind to him.”

Thomas at work at Common Roots Farm in Santa Cruz, California.

Thomas at work at Common Roots Farm in Santa Cruz, California.

By Sarah Fairchild

A Feeling of Belonging. Unconditional Support. Being Seen and Accepted. We all strive to have these elements in our lives, and we passionately want them for our children. But when I consider a young adult like my Thomas, a handsome, wonderful young man with severe autism, I have always harbored a fear that these essential elements of life would be elusive.

Thomas is anxious, sensitive and wary. He is not able to have a conversation with words. He fixates on things like needing to wear the same shirt (or same few shirts) all the time. He wore red lobster pajamas for about 7 months and dramatically fretted each and every time he was separated from them for washing. He hates when almost any of his clothes have to be in the washer. While he’s waiting for the washer to finish he will rock on his feet and hold his fingers tightly, crushing his little pinky finger down sideways under all the other fingers in the same hand. He once pried a locked washer door open, bent the metal to get to his clothes. He can’t be without his water bottle, on which he taps, taps, taps all day and all night. 

Don’t get me wrong, I don't think there is anything wrong with his attributes, but as he turned 18 and then 21 and he aged out of the school system and left his school-based community, I worried whether Thomas would find people to be his community, and I didn’t think he wanted to be alone. Then he found Common Roots Farm.

Thomas started volunteering at Common Roots Farm in Santa Cruz, California about four years ago, before there were crop rows or raised beds. He started at the beginning when the farm needed his strong body to move soil around. He began doing work like shoveling and pushing a wheelbarrow, and it was great. He was good at these things! He liked the predictability of the expectations and how he could do the work independently. When he got tired and wanted to gallop around (he gallops more than runs) while shouting and making shrill noises, it was OK. He was not expected to be anything but who he was. He liked that. No shaming. No sideways glances, just “Hi Thomas, happy to see you” as he whizzed by.

As the crops got situated and fences got put in, Thomas found new work. The inclusion specialist helped him learn how to cut plant debris into smaller pieces for better composting, and he focused on it for hours at a time, and was proud of his accomplishments! He has taken on watering, harvesting tomatoes, and hauling weeds. As years have gone by, he now knows the farm, he feels comfortable there. He feels wanted, and understood there.

New crops sprouting at Common Roots Farm.

New crops sprouting at Common Roots Farm.

In the city or near cars he has to be closely supervised and monitored. On the farm he walks far ahead and makes his way on ground that is safe and kind to him. When other Common Roots Farm folk see Thomas, and say “Hi” to him, he gets a little grin but keeps on moving. Which is what feels right for him. He doesn’t feel comfortable stopping too much. And no one minds. In fact, they smile too. He’s accepted for who he is, and also cherished for the man he’s become. And for us both, it’s a tremendous blessing.

Sarah Fairchild and her son Thomas live in California. You can learn more about Common Roots Farm here. “At Common Roots Farm, people with and without disabilities can participate on our urban farm, taking care of plants and animals, and creating friendships with one another that sustain everyone.”

Some Autism Podcasts to Keep You Company During the New Lockdowns

With the latest surge in Covid a lot of us will be locked down at home and perhaps seeking a bit of non-contagious company. Here are four autism- and DD- oriented podcasts to consider, and please let us know others we should add to our list:

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Autastic: A Comedian’s Guide to Autism
Featuring comedians Kirk Smith and Graham Kay. They discuss their own loved ones with autism and comment on autism in the news.

Autism Science Foundation Podcast
Featuring Alycia Halladay, PhD, Chief Science Officer, Autism Science Foundation. Focuses on the latest developments in autism research.

LOMAH Special Needs Podcast
Deep dives into a multitude of topics (eg, special needs planning, severe behaviors, education). Featuring Kim Albrecht, a California-based autism mom

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Disorderly Blondes
South Florida moms, Brenda and Kristi, candidly discuss special needs (autism) motherhood while balancing heels, cocktails, and meltdowns.

Coffee with Caregivers
Jess Ronne of JessPlusTheMess.com chats with caregivers about the joys and trials of raising a child with complex needs. Jess is also the founder and executive director of The Lucas Project—a non-profit which provides recognition, resources, and respite for special needs families.

Making Scents Out of Autism
Autism moms discuss starting Beloved Bath- a candle and soap business that provides meaningful employment for people with autism.

A 25 Year Look Across the Spectrum with Kelly Bermingham & Jen Lucero
Kelly (McKinnon) Bermingham, MA, BCBA 25 years in the field of helping adults and children with autism talks to Jennifer, mom to Dylan (with ASD age 21) about different topics related to supporting and living with autism. Hear how they combine research topics with real-life experiences in these quick and easy to listen episodes.

Death by Severe Autism

In the wake of senseless tragedy, a psychiatrist reflects on severe autism’s painful realities.  

Photos, flowers and tributes in front of the scorched home of autism advocate Feda Almaliti and her son Muhammed.

Photos, flowers and tributes in front of the scorched home of autism advocate Feda Almaliti and her son Muhammed.

By Lee E. Wachtel, MD

With the presidential election only two weeks away, our country stands at a tremendous crossroads during an era of unprecedented health and social challenge. Our lives literally seem at stake. As Republicans and Democrats spar on hotly contested issues ranging from Covid-19 to racial and social equity, climate change and the Supreme Court, disability activists are also jockeying for power and planning their next steps in whatever administration the American people elect. 

I had been quite excited to participate in some of these political advocacy initiatives, until I was upbraided and accused of “ableism” and hurting others’ feelings when I asked what plans might include those with severe autism and intellectual disability. I was informed that “severe” was an unacceptable term, and as discussion of this topic was deeply upsetting to some individuals, I would be dismissed from the committee if I mentioned it again. 

Let's be clear. There is obviously, without any doubt, such a thing as severe autism. The tragic death of autism advocate Feda Almaliti and her autistic 15-year-old son Muhammed (often called “Mu” or “Hammoudeh”) in a house fire in the early hours of September 26 underscores this reality, and also just how critical it is to never back down. We must never allow the plight of children and families dealing with severe autism to be suppressed by advocates who actively seek to downplay the serious mental challenges that ended up killing both Mu and his mother.

Feda, her sister Maysoon and Maysoon's daughter safely exited the burning home, but Feda ran back inside and upstairs to save Mu. Maysoon described what happened next:

“I ran back to the front door to scream for Feda again- as if that would help her come down faster. I can hear the popping of glass and the faint noises of Hammoudeh crying, “No, No, No" in response to Feda pleading with him. ‘HAMMOUDEH COME ON WE HAVE TO GO, NOW, WE HAVE TO GET OUT NOW!’

“The crying and screaming start to fade, probably not lasting more than thirty seconds. Then it stops and all I can hear is myself screaming for Feda and the words ‘my family.’ The realization of how useless and helpless I became made me sick and I wondered if my heart would give out any second.”

In other words, Feda ran back into the burning two-story structure to coax her 6’2”, 280-pound autistic son out of his room and down the stairs. But he would not budge, and Feda stayed. When the fire officials found the bodies, Feda was embracing Mu.

After a colleague and autism parent commented that “Autism killed Feda and Mu,” I had the chilling recognition that these two incredible people died a horrific death precisely because a severely autistic and intellectually disabled kid was unable to transition from point A to point B.

I’ve worked with autistic youth for nearly two decades and have seen countless behavioral protocols developed with intricate layers of reinforcement to gain compliance with necessary daily transitions. Yet while I’ve had kids plop down in the road or tantrum naked in busy airport hallways, I’ve never had any autistic child suffocate and burn for failure to move. 

Typical teens in this crisis would have immediately run down the stairs. Indeed, most people with autism would have done so as well. The autism and disability advocates who attend college and graduate school, tweet their condemnations of autism parents, and campaign for policy reform and who are largely capable of high levels of independent stewardship, would have not hesitated. And those with physical handicap without severe mental and intellectual disability would have grasped the urgency of the situation and likely followed a planned and practiced exit strategy. 

Feda Almaliti was an autism trailblazer beyond compare, and her autistic son Mu was cherished for his infectious joy. But by any reasonable measure, his autism was completely unlike that of the autism self-advocates. It was severe – Feda herself described him as “Autistic as F&@#” — and was compounded by severe intellectual disability. Most importantly, in a dire situation his severe impairments rendered him incapable of taking a simple action to save his own life. If Mu had mild autism, and lesser intellectual disability, I have no doubt he would have heeded his mother's words and fled the fire. Mild and severe. More and fewer IQ points. It all matters. It matters so much that in this case it meant the difference between life and death.

My one hope is that this tragedy may actually serve as a lesson to disability activists who dismiss the reality and plight of the severely disabled while narrow-mindedly pursuing their own agendas. There are so many Mus and Fedas out there facing horrendous hardships. Dismissing their realities — as I was essentially asked to do by current disability leaders — would not only have been a grave violation of the medical ethics to which I adhere, it would carry potentially devastating consequences for national disability programs and policy. 

Whichever administration is in power after the election, they need to hear about severe autism. They need to hear about it loud and clear. Lives are on the line. 

Lee Elizabeth Wachtel, MD, is a pediatric neuropsychiatrist and the Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute in Baltimore, Maryland, an inpatient unit serving youth with neurodevelopmental disabilities and severe behavioral and psychiatric disturbance. She is also an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine.