​By Mary E. Chollet • Posted May 8, 2018

​Jessica Clark didn’t set out to be a pioneer, a role model or a record setter.
At age 10, sitting up front with her parents at Mass, she just wanted to serve on the altar like other kids did.

“I love to volunteer wherever I am … church, school … anywhere I can do something,” said Jess, now 36. “I want to give back however I can.”

Never mind that 25 years ago girls were just breaking into the ranks historically known as altar boys. Never mind that her Down syndrome presented some intellectual challenges. Never mind that she also had a significant vision impairment and was considered legally blind.

Jess just wanted to serve. And with the support of her family, pastor, ministry leaders and other servers, she did.

Today Jessica Clark is still a regular altar server at her home parish of St. John Chrysostom in Wallingford – an extraordinary, if not unique, ministry record that has won her parish’s gratitude and admiration.

On Sunday, May 6, Father Edward J. Hallinan, St. John’s pastor, honored Jess and her widowed mother Joann in a surprise presentation during his homily. The homily focused on signs of how God’s love breaks into daily life, signs that “God’s love rules the world.”

To Jess’s amazement, Father Hallinan called her from the altar and cited her ministry as one such sign. He also called up Joann, honoring her as the “loving, tender mom” behind her daughter’s faith and success. As the congregation applauded, he thanked the Clarks and presented gifts from the parish.

​The vision impairment was in some ways more challenging. At the time, the altar steps had no handrail, and the bright lights glared on the pink marble, making it difficult to see the end of each step. Jess learned to slide her foot to the edge until she got the feel for the layout.

Lighting the altar candles was also tricky at first, but a guiding hand and quiet cues from other servers helped her learn.

“Once she gets used to her surroundings, she’s OK,” Joann Clark said.

Finding the right alb for Jess in a closet full of white robes was a challenge until Mom thought to put a big red dot on the label of those that were the correct size for her daughter. Other servers taught her the tricks of tying the cincture, a rope-belt worn around the waistline of the alb.

Still, for years, Jess limited her roles to candle- and cross-bearer. She was nervous about carrying sacred vessels and serving the Mass, her mother said.

One January Sunday, however, no-shows by every other server meant a “battlefield promotion” to serving the entire Mass solo. Father James R. Bajorek, then the pastor, assured Jess that they could work it out. And, with his well-known gentle guidance throughout, they did.

Since then, Jessica has served all Masses – assisting bishops, serving at Triduum liturgies, jumping in at every opportunity. As the parish’s altar server ranks have shrunk over the years, she is needed more than ever. And her years of expertise have given her an eye for details that younger servers can miss.

Not unusual to find disabled people serving the church

Neither Jessica’s challenges nor her age have ever set her apart from other servers, said John Spinelli, who with his wife Marie have overseen St. John’s altar server ministry for more than 20 years. “Jess has been a great blessing to us at SJC and a great role model for all SJC individuals with disabilities,” said Spinelli.

And while her length of service has been unusual, her role has not, said Sister Kathleen Schipani, I.H.M., director of the archdiocesan Office for Persons with Disabilities and the Deaf Apostolate.

“Individuals with disabilities are willing and able to serve the church in many and varied ways,” said Sister Kathleen. “Pastors and parishioners often tell me of the dedicated service of their parishioners with disabilities. Altar servers, lectors, extraordinary ministers of holy Communion, ushers — you name it and you will find parishioners with disabilities in these ministries throughout our archdiocese.
“Individuals with disabilities,” she added, “are agents of evangelization, drawing others into the heart of Christ’s boundless love.”

Large strides made, but ‘a lot of work to be done’
​
With one in five Americans – more than 55 million people – having a disability, ministry by individuals with disabilities should not be unusual.

Eighty-four percent of people with disabilities say their faith is important to them, and nearly half of those with severe disabilities attend worship at least monthly, according to the Collaborative on Faith & Disabilities, a multi-university initiative focusing on disability, spirituality and faith communities.

As originally reported in Havertown Life - a local blog

​All photos by Erin Ingraffia / Five & Dime Studio Photography

​
​Many parents might not be too happy to hear one of their children call their sibling a nerd.

My neighbors, Greg and Linda Tino, welcomed it. Until recently, their 24 year old son, Gregory, had never been able to take advantage of one of the major benefits of being an older brother: teasing your younger siblings.

Gregory has autism. He’s the oldest of three (he has a sister, Alyssa, and a brother, Ryan). For the first 23 years of his life, he was only able to communicate with his family on a very basic level. To put it simply, it is hard for Gregory to control his body and mind at the same time, which makes speech difficult. Trying to communicate his needs could quickly turn into a frustrating guessing game for his family.
​
All of that is changing. Over the past year, Gregory has embarked on a remarkable journey that has opened the doors to a new world of communication for him and his family. Spelling to Communicate (S2C) is a communication method that teaches non-speaking  people with autism to communicate using a letterboard. (Non-speaking is a term that is applied to people who cannot speak, can speak minimally, or those who can speak but do not speak communicatively.)

Then Emily asked Gregory some open-ended questions.
When asked what inspires him, Gregory’s right index finger moves smoothly across the board, spelling out the following words:

MY FRIENDS AT INSIDE VOICE INSPIRE ME

When asked what advice he would give someone struggling to make a change in life:

I WOULD TELL HIM THERE IS SO MUCH TO BE GAINED FROM TRYING NEW THINGS

When Gregory’s parents first learned about the S2C method, and the success many of its participants were experiencing, they were intrigued but did not want to get their hopes up too high.

“We didn’t want to be deluded,” says Greg, who is a physician.

The family had to travel to Virginia for the initial sessions, as that was the closest available location at the time. Gregory took to the method quickly, and the results were undeniable.

Greg recalled a lesson which was focused on Dr. Seuss, and the rhyming patterns he used in his stories. Elizabeth Vosseller, the Speech-Language Pathologist who developed the S2C method, asked Gregory if he thought he could create a poem using the same style as Dr. Seuss.

With no hesitation, Gregory spelled:
​
THE WAY TO GO IS EASIER THAN IT APPEARS
I WANT YOU TO KNOW YOU MUST PUT AWAY YOUR FEARS
IS THIS SIMPLE? NO!
YOU CAN EXPECT SOME TEARS
MY BELIEF IN YOU IS STRONG
YOU WILL NOT PROVE ME WRONG

​About a year ago, Inside Voice opened its location in Springfield, Delaware County. Colleen and Frank Foti, whose adult son Brian has experienced tremendous success using the method, led the effort to open the center. Brian’s brother, Tom, is now also a communication partner at the center.
There are currently 15 participants at Inside Voice, referred to as spellers, whose ages range from 16 – 57. All are experiencing success using the letterboard to communicate.

Emily attributes the success of spellers using the letterboard to their desire to communicate, more than any other factor.

“This population is determined to show the world what they are made of,” she says.

“This is not just my child,” Linda emphasizes. “We used to think of autistic savants – I now realize they are not the exception.”

It is not an exaggeration to say this method may completely change the way the world views people with autism. It is growing rapidly, with centers using this method now located across the country, including two in Pennsylvania.
​
As Emily puts it, “I believe it is going to take the world by storm, and hopefully it will reach as many people as it possibly can. This population is going to be able to communicate, and they are going to have a lot to say.”

​HAVE AN OPEN PERSPECTIVE

This is the advice Gregory spells when I am visiting his session. He is aware that some people may find this method to be, well, unbelievable.

But what I witnessed was Gregory independently communicating his thoughts. There was no prompting of specific words, or guiding of his finger to certain letters. In the few cases where he pointed to the wrong letter, he immediately pointed to the “X” on the board, signifying that he had made an error. What I witnessed was a young man completely aware of what he was saying.

When Gregory was diagnosed at age 2 ½, his parents were told that he would most likely never talk. It was believed that many children with autism had severe intellectual disabilities, and it was almost impossible for Greg and Linda to tell what Gregory could actually understand.

At that time, one in 10,000 children received an autism diagnosis each year. In 2017, that number was one in 45.

“We decided from the very beginning that we were going to do everything we could to maximize his potential,” says Greg. “That has always been our guiding principle.”

Even with access to the best doctors, therapists, and resources available, many facets of Gregory’s autism have remained mystifying.

But Inside Voice has a motto: Confidence in Competence.

It is clear to me why this is such an important aspect of their core philosophy. On the surface, it does appear that Gregory may not even be listening while you talk to him. He may move around, and talk or sing to himself, giving no indication that he is absorbing what is going on around him.
​
“We are so used to judging people’s abilities based on what their bodies can do,” says Emily. “What I have learned to do is presume competence despite what I see on the surface.”

​Learning to use the letterboard is “not a magic process,” says Emily. The spellers work hard. Starting with a board that contains larger, hollow letters, the spellers start by using a pencil to point to each letter. As S2C’s website explains: speech is a motor function. S2C works to coordinate the motor skill of communication with the cognitive function of language (our ability to think and understand in words). As spellers achieve fluency, they begin using their index finger to point, as well as a “laminate” – the type of letterboard Gregory now uses – which is a laminated piece of paper, slightly smaller than a typical placemat, with the alphabet printed on it. The ultimate goal is for spellers to be able to use a computer to speak.

Gregory now uses the letterboard as part of his daily routines. While Linda explains they still have their everyday challenges, there are basic aspects of life that have been made much easier because of the letterboard.  Linda can find out what kind of sandwich he wants to bring for his lunch break at his job (Gregory works with a job coach and works in the bakery department of a local grocery store, as well as stocking shoes at a local department store, and at a veterinarian’s office once a week). For the first time in his life, if Gregory has a headache, he can now let his mother know that.

He can also do other important things, like call his brother a nerd.
​
Greg laughs, recalling how Gregory teased his younger brother this way through the letterboard. These are the everyday interactions, the joking around, the busting of one another’s chops, that many families take for granted. Not the Tinos.

Another important part of Gregory’s experience at Inside Voice is the community that he has gained. A group of spellers meet each Saturday for a group session. Again, it may appear to an uninformed observer there is no real interaction happening.  But, using their letterboards, the group talks about many topics, they share their feelings, and they even play games like UNO together.

Emily asks Gregory to tell me what the group has named themselves.

Gregory smiles and spells: THE GANG

They shared transcripts of a recent group session with me. I laughed when I read how The Gang eggs each other on during the game of UNO, just as any other group of friends would (one speller said I AM GOING TO CRUSH YOU ALL). At the end of the session, The Gang shared some insights about living with autism:

SEE BEYOND MY DIAGNOSIS. I HAVE SO MUCH TO OFFER THE WORLD.

NON-SPEAKING DOES NOT EQUAL NON-THINKING! I AM A GREAT THINKER, AS IT TURNS OUT.

WE USED TO BE VOICELESS BUT NOW WE HAVE A VOICE FOR CHANGE.
CHANGE THE MINDSET.

I AM CAPABLE. I AM SMART. I AM AWARE.

And Gregory’s contribution: I AM HUMAN FIRST, MY AUTISM IS ONLY ONE PART OF MY IDENTITY.

This is the message that the spellers, the Tino family, and the folks at Inside Voice really want to get out there: do not treat people with autism as though they do not understand what is going on around them. Interact with them. Talk to them about the things that any person their age would be interested in. Even if it is not apparent on the outside, they are listening.

We have so much to learn from those who have lived with significant challenges, and my time with Gregory was a humbling reminder of this. During the session I attended, he offered the following advice:

I THINK MY AUTISM HAS GIVEN ME AN APPRECIATION FOR THE SMALL JOYS IN LIFE

THE ADVICE I WOULD GIVE IS TO REMEMBER TO GIVE THANKS FOR THE LITTLE JOYS IN LIFE
​
Thank you, Gregory, for the joy you bring to life. It certainly is not small.

NEW HAVEN, Conn. — Children and teenagers with autism face challenges every day fitting in with friends, classmates and others in the world around them.
“My perspective is that people with autism are different, just like every other human being — unique, one of a kind,” said Dr. Roger Jou, a psychiatrist at the Yale Child Study Center who treats and works with those on the autism spectrum. But they often feel lonely, unable to find others they can relate to, he said.


There are medications to address behavioral problems, such as irritability and aggression, and to treat secondary symptoms that those on the autism spectrum often deal with, including depression, anxiety, attention deficit hyperactivity disorder and mood disorders.


But a new medication, which is being tested in a nationwide clinical trial, could become the first drug to increase the ability of young people with autism to connect with others and to overcome the other symptoms of the disorder.
“The core symptoms of autism are deficits or challenges with social interaction, communication, restricted interests and repetitive behaviors,” said Jou, Yale’s principal investigator for the trial, known as the aViation study. Yale is one of more than 30 sites nationwide taking part.


“Really it is the core symptoms that make navigating the world so difficult” for those with autism, Jou said. “Everything we do kind of relies on one’s ability to interact with others. … So anything that could help with that … could potentially lead to a benefit. The ultimate goal is better quality of life.”


People with autism may “have a tendency to be intensely interested in one or a few things to the point where it crowds out other things that are going on around you,” Jou said. That could be something such as trains or even a fascination with a fan or washing machine, he said.


Among repetitive behaviors are lining things up or flapping the hands. “Some kids like to spin around in circles,” Jou said.
The aViation study is testing whether balovaptan, developed by the Swiss pharmaceutical company Roche, will relieve these symptoms by stopping a form of the molecule vasopressin, V1a, from binding to receptors in the brain. Vasopressin is thought to influence social behavior.


“There are studies that are done in animals that show that if you block this receptor, their social behaviors will improve,” Jou said. “In early human studies, it’s been shown to lead to subtle improvements in social behavior.”


The Food and Drug Administration has designated balovaptan a breakthrough therapy, “which is kind of a big deal because it’s mainly reserved for medicines that show a certain amount of promise,” Jou said. The lack of any medication to treat the symptoms of autism “creates more of a sense of urgency,” he said.
The aViation study is a phase two study, which includes 300 high-functioning children and teens (ages 5 to 17) over 39 weeks. The participants take either of two strengths of the drug or a placebo for 24 weeks, giving them a two in three chance of getting the medicine. There are 12 visits, half at the Child Study Center and half at the youth’s home, for which the participants are paid, up to $100 for a site visit.


The study is “looking more at children who don’t have a lot of medical issues,” Jou said. “They have to be ‘high functioning’ only because we need to get feedback from people participating and their parents.”


Jou said younger children are especially needed. “It’s been harder to get the smaller kids in, but that’s also very important because we want to make sure they’re represented in the study so the results can be applied to them.”


He said the guidance in giving medications to children is “start low, go slow.”
“There’s definitely a degree of caution because somebody may not respond in the same way and they may be more or less prone to side effects,” he said.


The need for an effective medicine is great. According to the Centers for Disease Control and Prevention, about one in 68 children is diagnosed with autism spectrum disorder. Boys are 4.5 times more likely to have autism than girls.
The FDA has approved only two medications for those with autism: risperidone and aripiprazole, which are also used for schizophrenia and bipolar disorder. “They’re used for the treatment of irritability and aggression,” Jou said.
© 2018 New Haven Register
Distributed by Tribune Content Agency, LLC

Disability advocates are scrambling to get funding renewed for a federal program that’s helped thousands with developmental disabilities leave institutions but is now on the brink of collapse.


For more than a decade, a Medicaid program known as Money Follows the Person has assisted over 75,000 people transition from institutions to community-based living. But the program expired in September 2016 and state programs have been running on fumes ever since.


In recent days, however, U.S. Reps. Debbie Dingell, D-Mich., and Brett Guthrie, R-Ky., unveiled a bill known as the EMPOWER Care Act (H.R. 5306) to reauthorize the program, allocating $450 million per year through 2022. Similar bipartisan legislation was introduced in the Senate late last year.


The move is boosting the hopes of advocates who would like to see the Money Follows the Person renewal folded into an omnibus spending bill that’s expected to be approved by Congress this week or another larger bill later this year.
“Eight states have already exhausted their MFP funding and every other state will exhaust their funding by the end of the year,” said Alison Barkoff, director of advocacy at the Center for Public Representation. “As a result, states are already starting to dismantle their programs. So it is urgent.”


Barkoff said advocacy groups have been meeting with lawmakers and urging constituents to ask members of Congress to support the measure.


According to a 2017 report from the U.S. Department of Health and Human Services, the federal government has distributed nearly $3.7 billion to 43 states and Washington, D.C. for Money Follows the Person since it was established.


The cost to care for people with intellectual disabilities who have transitioned to community-based living through the program declined 30 percent, or $48,156 per person, in the first year, the report found, while quality of life improved.
​

“This bill would extend a program that represents a win-win for states and individuals with disabilities. Individuals regain their independence and life in the community, while state and federal governments save money,” said Nicole Jorwic, director of rights policy at The Arc. “We are confident that if passed this bill will greatly assist states as they continue to rebalance service systems into the community and move us towards a more inclusive society.”

Amid vocal protests from disability rights activists, the U.S. House of Representatives approved the ADA Education and Reform Act Thursday on a vote of 225 to 192.


Critics say the controversial legislation, also known as H.R. 620, would severely damage accessibility protections laid out in the 27-year-old landmark Americans with Disabilities Act. The vote was split mostly along party lines with a dozen Democrats joining nearly all House Republicans voting in favor of the bill.


The legislation would require people facing accessibility barriers at public businesses — whether that means a lack of wheelchair ramps, special parking or bathroom facilities — to provide written notice of their concerns. Businesses would have up to 60 days to respond and then an additional 60 days to begin improvements.


Proponents of the bill say frivolous lawsuits around ADA compliance have created significant problems for small businesses, but disability advocates say the language in the ADA Education and Reform Act would essentially allow businesses to take no action on accessibility until a complaint is filed.


On the House floor, Rep. Jerrold Nadler, D-N.Y., said the legislation amounts to a “virtual get out of jail free card” for any business that wants to avoid accessibility requirements. But Rep. Bob Goodlatte, R-Va., described situations in which small business owners were sued for posting the wrong shape of sign, or for very minor infractions, creating a “a cottage industry” of costly lawsuits.


In the days leading up to the vote, disability advocates had been mobilizing to protest the legislation. At least 10 people with the disability rights group ADAPT were arrested Tuesday by U.S. Capitol Police after demonstrating in the Capitol building.


And on Thursday, many protesters in wheelchairs chanted and shouted from the U.S. House gallery in the minutes leading up to the vote. Some were escorted out of the gallery, while lawmakers — including Sen. Tammy Duckworth, D-Ill., who herself uses a wheelchair — looked on.


“This bill affects us tremendously,” said Marilee Adamski-Smith, the national media chair for ADAPT. “We are worried it’s going to push back disability rights 27 years, to before ADA protections were in place.”
​

Currently, there is no companion bill in the U.S. Senate.

BRUNSWICK, Maine — Kate Lord didn’t have a plan when she graduated from Brunswick High School in 2014. For two years, she was unemployed. Eventually, her father was able to use his connections at Bowdoin College to get her a job working in a kitchen. For 20 hours a week, she lines muffin pans and preps dessert trays.

At this time, the bakery job suffices. Kate is a hard worker and a pleasure to be around, her supervisor said. But she has no interest in the food industry. Her father believes she could do a lot more, and wishes her high school had done more to help her visualize her future and then take steps to reach her goals.

Kate has autism and borderline intellectual functioning, meaning her IQ is slightly below what is considered average. She struggles with decision-making and executive function, which are the skills that allow people to organize information and respond to it. But her father, Rich Lord, and disability experts say there’s no reason she can’t find a more fulfilling career at which she can excel.

Schools are legally obligated to create meaningful post-schooling plans for students with disabilities as part of their Individualized Education Programs, or IEPs. Under federal law, special education students must have transition plans in place by age 16 that include work, school and independent living goals that a student would like to achieve. Several states require schools to start this process at age 14.

But Kate’s education failed to set her up for higher education or a career, as is often the case with special education students. Her experience after high school shows how important legally mandated transition plans and services are — and demonstrates how hard it is to do them right for all students.

“A really good transition plan shows how each year of school is linked to the next and the final outcome that they’re looking for,” said Leslie Darrell, a speech pathologist in Maine who often works with transition-aged students. “If you have a great team, you have a great transition plan and follow through. If you don’t, then you have a piece of paper that isn’t followed, understood and is very loosey-goosey.”

Interviews with more than 100 parents, students, advocates and experts across the country painted a picture of a special education landscape where transition planning and services are largely neglected. Students with disabilities who could pursue higher education or meaningful employment are instead living at home and working low-wage jobs. Some are unemployed, or, as Pennsylvania mother Chris Bradley described it, “graduating to the couch.”

A 2011 federal study found that although the employment rate within 6 years of leaving high school for special education students (71.1 percent) was actually slightly better than for general education students (70.7 percent), the special education graduates earned significantly less — $9.40 an hour, compared to $13.20.

The higher employment rate is likely partially attributable to the fact that former special education students are less likely to be spending that time in college; 21 percent of special education students surveyed were enrolled in college compared to 41 percent of general education students.

Employment rates varied considerably by disability. Nearly 80 percent of students with learning disabilities had jobs, compared to 45 percent of those with autism and 55 percent of those with an emotional disturbance, the federal report found.

Experts and advocates say that high schools can do more to help improve the situation, though. Good transition planning and services can help special education students flourish after high school. The best transition planning requires several things, according to experts:
1. An accurate and thoughtful assessment of a student’s abilities and interests.
2. Clear, measurable goals related to his or her postsecondary aspirations.
3. Appropriate support and services to help them achieve their goals.

Far too often, however, families are left like Kate’s, struggling to fill in the gaps postgraduation that students should have figured out before they earned a diploma.

Making a plan
Kate wasn’t sure what she wanted to do when she graduated, and Lord said no one at her school talked to her about it in a meaningful way. When Kate was asked about her aspirations, he said, she told school officials she wanted to be an actress. But he worries no one probed deeper to ask questions about why she wanted that job and what other related careers she might explore.

Lord acknowledged that he struggled himself to get answers out of Kate about what she wanted for her future; he said he needed the help of professionals to crack the puzzle.

Kate had loved being in the ensemble in musicals such as “Grease” and “West Side Story” at school. Lord wondered if Kate’s love of movies and theater meant she might find behind-the-scenes jobs. But he couldn’t figure out a way to translate those interests into employment in Brunswick.

Looking back, he was also concerned that educators didn’t push Kate as hard as they could have academically, putting her at a further disadvantage as she searches for a career. Kate herself says that her classes were easy and that she “almost never had homework.”

But Lord doesn’t blame teachers. He blames the system.

“Everybody meant well,” he said. “But there’s only so much they can do, they can offer her. She needed extra attention everywhere.”

Many districts rely on formal assessments to help schools create viable plans for students. In Washington, D.C., a district official said that public schools give some students a questionnaire that covers items such as, “Do you prefer to work alone or with others?” and “Is it more important to you to earn a lot of money or to help others?” School officials are also supposed to discuss goals and the steps necessary to reach them with students and their parents.

But advocates and lawyers interviewed said Kate’s experience is common. Many said the vast majority of goals and measures they have seen are vague or even nonsensical and fail to live up to their legal requirements. Plans often include too few goals, or superficial ones.
If a student likes football, for example, educators may note that he wants to join the NFL. “Everybody doing this work has seen this (in a) transition plan,” said Maria Blaeuer, staff attorney for the D.C.-based Advocates for Justice and Education. “That’s not a transition plan. That’s just filling in blank lines.”

College-bound students might be instructed to research colleges and fill out college applications — but the plans often don’t include training in other essential skills for college, such as how to study. Frequently, transition plans demonstrate low expectations. Parents and advocates say many special education students are steered toward what one parent referred to as the “five Fs”: food, folding, flowers, filing and filth, referring to cleaning and janitorial services.

Bob Cunningham, an expert in learning and attention issues for the nonprofit Understood.org, said part of the problem is that in many schools, nobody “owns” the transition process. “I think because much of what happens related to kids with learning and attention issues is immediate, people are focused on the immediate,” he said.

In other words, educators often don’t think about the future until it’s too late.
By Kate’s senior year, her IEP reflected transition goals driven largely by her parents. They wanted her to take an online college course and look for work in Brunswick in a “paid position that utilizes her theater/drama interest and skills,” according to a draft of the IEP.

Lord said he believes they were copied and pasted from emails he had sent the school in an effort to make sure they were complying with the law. There wasn’t a thoughtful discussion about whether Kate was on board with those plans and what could be done in high school to help her achieve them.

The plan “just lacked depth,” Lord said. “We didn’t have transition goals we looked at and I thought made sense.”

Barbara Gunn, director of student services at Brunswick School District, joined the district after Kate graduated and was unable to comment on her specific situation. But she said that, for all students, crafting a meaningful transition plan is paramount. “That team has to give good thought to what that student would like to do and is capable of doing,” she said. “You’ve got to do some sort of survey on what their interests are, what they have skills in.” If a student like Kate is unsure of what he or she wants to do with their future, a transition goal may focus on doing career exploration to gauge interest in future careers.

The district is also considering beginning the transition planning process in eighth grade, instead of ninth, to make sure enough time is devoted to this process. Gunn said the district provides professional development for teachers that focuses on transition and has recently begun sending a teacher each month to a regional group meeting to discuss transition topics.

Putting the plan into action

Federal law says schools are supposed to make sure students follow the steps in their plans, but there is no one watching to make sure they do. “One of the most frustrating things is there’s not services to back up the goals, even if the goals aren’t bad,” Blaeuer said. “It’s very perfunctory.”

Parents often have to take on the burden of making sure their children are getting the support they need to meet their transition goals because schools simply don’t devote enough resources to this part of special education. Some schools have a full-time coordinator focused on transition services. More commonly, special education teachers — who already have a full teaching load — are in charge of overseeing transition plans.

Lord tried to do his own research about what options were available to Kate and reached out to the school with suggestions. The district offered to transfer Kate to a vocational school, but the family decided against it. Kate was thriving socially in school and the vocational school focused on training students in subjects such as mechanics and culinary arts in which Kate had no interest.

Administrators also told the family they could connect with the Department of Behavioral and Developmental Services or apply for Vocational Rehabilitation, a federally funded service that helps people with disabilities access higher education and employment.

In her high school itself, though, there was little on site to help Kate. Her senior-year IEP cited a Service Learning class as a means of introducing her to different employment opportunities. That course is available to both general and special education students and provides students with opportunities to volunteer in the community.

“As we approached transition, it was my absolute goal to have her not fall off the map,” Lord said. “It’s unfortunate, she kind of has … it’s so difficult.”

Achieving the goals

It doesn’t have to be this way. Peter O’Halloran of Willow Grove, Pa., received special education services during his educational career due to developmental disabilities from complications during his birth. Peter has trouble with reading, paying attention and expressing his thoughts while speaking.

As a child, Peter said he wanted to be a Supreme Court justice. He loved math, social studies and working on a computer. In high school, Peter began to take control of his IEP meetings and frequently gave input about his future goals and aspirations.

Chris Bradley, Peter’s mother, said it took some pushing but the district was generally responsive to Peter’s interests. Sophomore year of high school, Peter took a survey for the district’s vocational tech school that matched him to the food service industry, a field in which he had no interest. He and his mom looked at a federal report with salary information for various jobs, and he realized an office job would provide a higher quality of life than a food industry job.

So Bradley refused to send her son to the food program. Instead she pushed the school to let him try enrolling in some community college courses offered through the school’s dual-enrollment program. He later enrolled in a new vocational tech program in office administration, which gave him the opportunity to also earn credits that could transfer to a community college.

“If I had sat back … Peter would probably be working in food service somewhere,” Bradley said. “I don’t think he would have tried to attend community college.”

The college courses had an unexpected result: Peter realized he actually didn’t want to go to college, and changed his goal. Although Bradley said she would have liked more opportunities to help Peter build a more supportive network in his hometown, the school did take some steps to help Peter work toward his goal of living independently, like taking him to the bank where he learned about setting up accounts and getting loans.

By any standard, Peter has been successful. After he earned his high school diploma, he went straight to a job as an office worker, just as he had planned. He is currently employed full time as an administrative assistant at a nonprofit in downtown Philadelphia. He regularly gives speeches about his experience with special education to local college and university classes that train teachers, counselors and school psychologists as well as at national and statewide education conferences on employment issues, health care and disabilities.

“It all worked out,” said Chris Bradley. “I think it was really successful but it took a lot of work. It was a full-time job for me to advocate for him.”

Kate’s family has now turned to nonprofit organizations and services for help. Kate worked with one local group to develop a career plan and spent three weeks in Minnesota at a life skills program which her parents hoped would introduce her to the idea of being away from home and improve her self-advocacy.

One September morning in the college kitchen where she’s employed, Kate seemed like any other young adult hard at work. She efficiently used a machine to spit out cookie dough and placed the balls on a baking sheet. Her shoulder-length blond hair was held back in a high ponytail — last summer she cut off 12 inches and donated it to Locks of Love — and she chatted with a co-worker about his plans for the day once his shift was done.
She said that although the bakery job was tough at first, now “it’s okay. They’re all really nice.” But she doesn’t want to work there forever.

She’s a big fan of the American Girl dolls — she’d like to work at one of their stores as a personal shopper or, she said, “maybe even set up display cases.” Her dad still thinks there might be a way to tap into her love of theater to find a career or at the very least would like her to get a second job in town. He understands that Kate’s case poses challenges — after all it still befuddles him. But he thinks more ground could have been covered before she graduated.

“I would have loved to have a much better idea of what her interests are,” Lord said. “There’s been a lot of work (for us) since high school.”

Peter, by contrast, is now enjoying the job he began planning for years earlier. He likes talking to clients and working on the computer. He’s making efforts to become more independent, including learning how to take care of a house (he lives at home but is saving money to buy one of his own) and do his own grocery shopping. He said there are stereotypes around people with disabilities.

“People with disabilities are able to work a full-time job,” Peter said. “I wish that people would look at people with disabilities, and (know) they are capable of having jobs and capable of living independently.”
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This story was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education.