All About Autism

The Elizabeth Lee Black School provides opportunities for students to explore their surroundings, learn, enjoy themselves, and achieve their highest potential. We are breaking barriers that hinder student participation in academic and recreational activities by developing programs and infrastructure with inclusivity at the forefront. These initiatives include:  

Cooking Up Practical Life Skills  

The ability to plan meals, understand kitchen and safety best practices, make smart food choices, and prepare healthy entrees and snacks is a skill that requires hands-on experience.  

Thanks to a grant from the Edith L. Trees Charitable Trust, the Elizabeth Lee Black School will establish a fully accessible kitchen with practical adaptations designed to meet our secondary students’ needs.  

This state-of-the-art kitchen will feature wheelchair accessible countertops, a spacious floor plan, and a wide range of meal preparation equipment perfectly designed to help students move toward greater independence and self-sufficiency while also giving them a taste of job opportunities in hospitality and service-related roles.  

Anticipated completion is spring 2025. 

Building A Playground of the Future, Now 

The Elizabeth Lee Black School has enhanced its playground with ADA-compliant equipment, ensuring all students, regardless of ability, can enjoy outdoor activities. This upgrade was made possible through the Emergency Assistance to Non-Public Schools (EANS) Grant. 

The new additions, Odyssey Hall and Inclusive Whirl, which are both made by Miracle Recreation™, provide a rich sensory experience. Students can engage with various tactile elements, listen, see, and play in their own unique ways. 

The Odyssey Hall includes features like textured roto panels and twisting treads, offering multiple play paths. It also has a wheelchair-accessible route, allowing every student to explore and have fun. 

The Inclusive Whirl offers a safe and comfortable spinning experience, designed to be level with the ground for easy wheelchair access. It also includes additional seating for more inclusive play.  

For more information about Miracle Recreation™ and its product line, visit www.miracle-recreation.com.  

Helping Students Beat the Beast  

The Barber Beast on the Bay is approaching its 11th year on Saturday, September 7. The 10-Mile Course features over 30 rigorous obstacles that challenge even the most well-trained athletes.  

The Adaptive Course, which features over 15 unique obstacles the involve pulling, pushing, carrying, and navigating, is fully accessible and coincides with the 10-Mile Challenges. Many of our students participate in the Adaptive Course.  

Regardless of which course someone participates in during the race, everyone can Beat the Beast and be a champion for the Barber National Institute’s mission of making dreams come true for the students and individuals we serve.  

I will be taking a break from blogging for the month of August. See you back in September!  

Obesity is a global issue. I was fascinated yet disappointed as I read some of the findings from the 31^st European Congress on Obesity. 

Highlights included:  

• Children who use screens during mealtimes are more likely to be obese as they are less likely to understand when they are full and keep eating because they are distracted by the screens.  

• The percentage of obese children and adolescents worldwide has quadrupled among both girls (1.7% to 6.9%) and boys (2.1% to 9.3%) between 1990 and 2022.  

• The prevalence of obesity in children with special needs is notably higher compared to their peers without special needs. According to the CDC, 20% of children aged 10 through 17 years who have special health care needs are obese, compared with 15% of children of the same age without special health care needs. Additionally, estimates suggest that 21.1% of children and adolescents (ages 10–17) with disabilities have obesity.  

• Childhood obesity is considered a life-threatening disease as modeling has shown that the life expectancy of a child with severe obesity is 39 years, about half the average. 

There are several contributing factors to obesity in children with special needs. Some of the key factors include:  

• Medications: Many children with special health care needs take prescription drugs that contribute to weight gain.  

• Family Stress: High stress within the family can lead to unhealthy eating habits and reduced physical activity.  

• Genetic Disorders: Certain genetic conditions can predispose children to obesity.  

• Social Isolation: Children with special needs may experience social isolation, leading to decreased physical activity and increased sedentary behavior.  

• Lack of Physical Activity: Barriers to physical activity, such as lack of interest, lack of developmentally appropriate programs, and behavioral challenges, can lead to obesity.  

• Unhealthy Eating Habits: Increased food portion sizes, greater consumption of sugary drinks, and limited nutritional options can also play a role.  

These factors can interact and compound the risk of obesity in children with special needs, making it important to address them comprehensively.  

Parents and caregivers can take several steps to address the contributing factors to obesity in children with special needs:  

Healthy Eating Habits  

• Provide Nutritious Foods: Stock the fridge and pantry with vegetables, fruits, whole grains, and other nutritious foods.  

• Limit Unhealthy Foods: Keep low-quality foods and drinks, like sugary soda, sweets, and super-processed foods, to a minimum and out of reach of children at home.  

• Family Meals: Eat dinner together as a family to encourage healthy eating habits.  

• Physical Activity: Create a home where being active daily is the norm, such as walking or biking. Choose activities that are both fun and age appropriate.  

.  Behavioral Interventions  

• Family-Based Behavioral Treatments: Participate in family-based behavioral treatments that target both children and their caregivers to promote weight management through healthy eating and exercise.  

• Behavioral Counseling: Engage in behavioral counseling to increase the likelihood of sustained weight loss.   

• By implementing these strategies, parents and caregivers can help children with special needs maintain a healthy weight and overall well-being.  

Yes, this is a challenging problem for many children and parents. However, working together, we can combat obesity and its impact on children with special needs, their families, and the community. 

Parents of children with a diagnosis of autism can find themselves with a myriad of questions and may feel overwhelmed as they work to find the appropriate treatment and care for their children. It’s easy to have uncertainty about the future, but a Parent Autism Support Group, facilitated by Barber Behavioral Health Blended Case Manager, Robin Fox, is changing the narrative surrounding how families support each other and better understand the wide range of resources available to them in the community.  

What can parents expect when participating in the Parent Autism Support Group?  

• An opportunity to connect with those families who are likely facing similar circumstances and adjust to changing dynamics together.  

• A chance to feel seen, heard, and understood in a safe and welcoming environment. 

• A support network comprised of fellow parent advocates and professionals alike who have you and your child’s best interests in mind.  

• Open and honest discussions surrounding the topics of helping your child navigate school, behavioral challenges, and fostering interpersonal relationships. 

• Guidance on how to approach the topic of autism with school staff, medical professionals, and caretakers who may interact with your child.  

• Information about insurance services and therapies that may be beneficial to your child and his or her unique abilities and needs.  

• The knowledge and skills to make decisions confidently about what works best for your child.  

The Parent Autism Support Group meets the second Tuesday of the month from 6-7 p.m. at the Barber National Institute’s main campus located at 100 Barber Place, Erie, PA, 16507. These sessions are free to the public, but registration is required. 

The August 13 session will focus on IEPs and the important role they play in outlining specific goals, support strategies, and accommodations tailored to meet the unique needs of children with autism. A member from the Arc Erie County will be available to answer questions.

Contact Barber Behavioral Health at (814) 453-7661 for more information.  

Recently, I was dismayed when I read an article that made claims that environmental and lifestyle factors are a key contributor to the rise in autism in recent years. The article, which was written by someone in the field of pediatrics with a gravitation toward holistic medicine, goes so far as to make the claim that with lifestyle modification strategies, including changing the diets of children with autism, these children may lose their autism diagnosis entirely.  

While I understand the importance of a well-balanced diet, exercise, and an appropriate sleep schedule as part of a healthy lifestyle, this claim is quite unsettling in that it gives false hope to those families seeking a cure for autism while also going against research within the medical community that supports autism is a complex genetic disorder. Lifestyle changes, while beneficial and necessary at times, will not cure autism.  

The fact is that there is an increase in the number of articles being published by people purporting to have expertise in the study of autism who are making baseless claims surrounding the cause, management, and cure for autism. For example, many people have been frightened into thinking that vaccines cause autism, resulting in many parents taking the extreme and dangerous measure of not vaccinating their children. This undoubtedly has increased the risk of children developing life-threatening diseases while having no relevant impact on the mitigation of autism.  

We all have a vested interest in better understanding the causes of autism and the appropriate treatment once diagnosed, but it’s imperative that information about the factors contributing to autism is shared responsibly so as not to mislead people and portray a false narrative that contradicts well-trusted research.  

As a parent of a child, now an adult with autism, at the time of his diagnosis, I, too investigated the best treatment approaches supported by research. Applied Behavioral Analysis (ABA) was the recommended approach and continues to be 28 years later. Ryan still has autism, but I believe that because of ABA treatment, he is a highly successful person. Ryan’s dreams have come true and so have mine! 

The Individuals with Disabilities Education Act (IDEA) ensures students throughout the country are provided with free appropriate public education. Recent data suggests that 15%, or 7.5 million, children ages 3 to 21 are receiving services under IDEA. 

During the 2012-13 year, 6.4 million students (about twice the population of Nevada) received services under IDEA. While this figure seems high, the fact is that the number of students requiring an Individualized Education (IEP) based on a qualifying diagnosis has only increased. This demand for services under IDEA has grown significantly due to factors such as earlier and more accurate diagnoses of autism, speech and language impairments, and intellectual disabilities, a decreased stigma associated with receiving special education, and the known benefits of special education on students who require such services to reach their full potential. Providing support for students with special needs and helping them maximize learning opportunities and foster essential skills for lifelong success is so important.  

It’s important to note that special education enrollment varies, sometimes significantly, from state to state. For example, students with IEPs in Pennsylvania, New York, and Maine account for 21% of the population. This figure represents states seeing high enrollment. On the other hand, only 12% of students in Idaho and Hawaii receive IDEA services.  

We are at a time in history when special education is a critical component of our education system, yet we are facing potential budget cuts that could put these services in jeopardy. For example, the House Republicans’ Labor, Health and Human Services, Education, and Related Agencies Appropriations Bills has been the center of significant discussion and debate recently. The bill recommends $72 billion in discretionary spending for the Education Department, which is $10 billion below President Biden’s budget request.  

We are amid a challenging time where budget cuts could mean fewer educators to meet the growing need for special education and reduced availability of services in areas where the need is most evident. The most effective way to ensure that funding remains available to support special education well into the future is to urge political figures to advocate for the passage of legislation that benefits students, their families, and the community.  

Contact your legislator and ask him/her to support funding for special education! One vote can make all the difference! 

It’s hard to go a day without noticing information in the news and online about the advances in technology and artificial intelligence (AI) tools. Educators are one group who are benefiting from AI and its seemingly endless array of features. I’d like to highlight the tech companies that are driving AI forward.  

Google has introduced Gemini that helps boost creativity and productivity by offering AI-powered chat for planning, learning, writing, and teaching. It has multiple capabilities, including the ability to understand and decipher different types of information, including text, images, audio, video, and code. Who doesn’t enjoy being more efficient?! 

Khan Academy and Microsoft have partnered to provide free access to Khanmigo, an AI-powered teaching assistant for teachers. Using Khanmigo, teachers can easily prepare tests, create homework with on-demand features, and simplify tasks that are critical for creating engagement and fostering cutting-edge activities. This platform is a real difference-maker for busy teachers who juggle a myriad of tasks. I’m sure we all know many teachers who fit this description.  

OpenAI has produced ChatGPT, a chatbot that has endless functions, including brainstorming ideas, generating social media posts, summarizing reports, enhancing writing, and translating text. This easy-to-navigate platform has many teachers using it – and loving it.  

While the prospect of having these AI tools at our fingertips is exciting and offers profound possibilities, it is especially important that teachers learn how to use these tools properly and responsibly to ensure their experience – and the experience of their students – is as meaningful and secure as possible. Schools would be wise to offer professional development opportunities for teachers that center on using AI in the classroom.  

For teachers, AI should be relevant to them and their students. It should offer the functionality that makes sense to them. AI is here to stay. With such rapid advancements in AI, it won’t be long before AI is an integral part of all schools. It is our job to better understand how AI can create positive change while supporting teachers as much as possible.  

PNC Grow Up Great is a $500 million initiative through the PNC Foundation to strengthen early childhood education programming for children birth to five years.  To celebrate its 20^th year, it is providing $10.5 million in grants to create outdoor learning environments in every market.  I am very passionate about serving the needs of young children and their families because we know that when children thrive, they are better prepared to take on life’s challenges, develop resilience, and succeed both in and outside the classroom.  

When PNC Grow Up Great was in its infancy, Marlene Mosco, the PNC Erie president at the time, contacted me and asked if she could nominate me to serve on the Advisory Board. I was honored to serve, and I have had the distinct privilege of working with countless forward-thinking leaders in creating brighter futures for young children and their families for over 15 years.  

In April, I joined some of our children who attend early childhood education programs at the Elizabeth Lee Black School for a 20th anniversary celebration of PNC Grow Up Great. The children were engaged in fun learning activities, enjoyed a wonderful lunch, and got to meet Jim Stevenson, the Regional President of PNC. I am truly grateful to Jim and his exceptional team who are so dedicated to supporting the advancement of early childhood education in our region and beyond. I’ve included some photos from our event.

Yesterday, I attended a PNC Grow Up Great Advisory Meeting to hear about an update on PNC and to learn about the factors impacting early childhood education as well as the programs and resources that will have the most impact for children, their families, and communities in the coming years. 

During the meeting, I was interested to learn:  

• PNC is establishing a new brand that reflects a full-service bank with an empathy advantage: Brilliantly Boring since 1865.  
• In 2023, 7% of 3-year-old children were enrolled in programs vs 3% in ’02.  
• In 2023, 35% of 4-year-old children were enrolled in programs vs 14% in ’02. 
• Declining birth rates will significantly impact the number of students enrolled in school. This might be a huge addition to being able to serve 3- and 4-year-old in schools.  
• Childcare continues as a significant issue and challenge for our work force.  

I am already looking forward to our next meeting this Fall. 

Although we have just completed the 2023-24 school year, we are already planning for the 2024-24 school year. Recruitment is certainly a major focus area. We know that there are significant shortages in the high demand fields of special education certified teachers as well as paraeducators for special education classes. This, combined with the number of students who qualify for special education, continues to present serious challenges to all of us in education.

We know that the reasons for shortages include:

• There is a surge in demand for teachers while the supply of qualified teachers is diminishing.
• Special education teachers are leaving the profession at a rate 2.5 times higher than general education teachers.
• Classroom environments are challenging due to the serious behavioral needs of students

We are in the process of identifying a variety of strategies that will, we hope, help to attract and retain teachers and paraprofessionals. These strategies include:

• Continuing to upgrade our salaries and offer sign-on bonus.
• Promoting tuition reimbursement through the Dr. Gertrude A. Barber Foundation for qualifying staff at all locations of the Barber National Institute.
• Expanding professional development opportunities so that staff feel supported and grow in their roles.
• Increasing mentorship programs for new teachers for providing guidance and support.
• Creating expanded partnerships with local universities that can help develop a pipeline of future teachers.  This would include exploring federally approved apprentice programs.
• Offering a mentor program for paraeducators who might be interested in pursuing teacher certification.

We know that we need both short-term and long-term solutions to create a sustainable work force of special education teachers and paraeducators for now and the future. Ultimately, focusing on retention strategies that work will help ensure the success of special education for years to come.

This week has been a celebration of our graduates who have made tremendous strides leading up this this monumental moment. We have two ceremonies, one for our Early Childhood (PreK Counts and Happy Hearts) graduates (33 students) and one for our High School students (9 seniors).  Our Early Childhood graduation, held in the afternoon, had a gym packed with parents, siblings, extended families and lots of balloons. The children sang and danced as a Thank You to their families. It was TOO CUTE! We were the first school experience for many of these children and now they are headed for kindergarten. Our High School graduation in the evening is more solemn as the students prepare to leave us for employment and/or various Adult Day programs.   

Graduation at the Elizabeth Lee Black School has a great deal of symbolism. It’s a culmination of years of hard work, commitment, creativity, and the belief that anything is possible if there is a will and an honest effort. Our graduates are continuing their journeys beyond the Elizabeth Lee Black School and the Barber National Institute, but they will always have a family here. Many of our high school graduates began as preschool children, and they are leaving here today as adults. This is a major step in the journey of their lives, and their family’s lives one that should be recognized for its significance. It is an act not only of personal commitment, but also of pride. They and their families have worked hard to get to this day.  

My challenge to each of our graduates is to continue to strive to achieve your fullest potential. The future is truly in your hands. We are here for you as a resource, today, tomorrow and the years to come.  

When Dr. Barber established the Barber National Institute more than 70 years ago, it was to ensure that all children and adults had every opportunity to go to school, get jobs, and become active participants in the community. Each of our graduates and their families have met their goals through hard work, diligence, and dedication. We are proud of what our students have accomplished and are inspired by each of them.  

Congratulations to the Classes of 2024! 

The Barber National Institute had the distinct pleasure of welcoming Dr. Valerie Arkoosh, Pennsylvania’s Secretary of Human Services, along with other elected officials across the Commonwealth, yesterday for a day of productive conversations surrounding the future of services for adults with Intellectual Disabilities and Autism and their families.  

Secretary Arkoosh is seen speaking during a press conference at the Barber National Institute on Thursday, May 30, 2024.

There are currently 4,500 people across Pennsylvania waiting for services like those provided by the Barber National Institute. Our Adult Day and Residential services, for example, ensure that adults with Intellectual Disabilities and Autism can live healthy and fulfilling lives while taking part in a wide range of activities in their communities. Unfortunately, there are far too many individuals waiting for critical services and not enough direct support professionals (DSPs) necessary to provide these services.  

“Achieving an everyday life with dignity is a goal for so many of our neighbors, friends, and loved ones in ID/A communities, but when they must wait for services, we are falling short in helping them meet this goal. Every Pennsylvanian with Intellectual Disabilities and Autism should receive the supports they need when they need them,” said Secretary Arkoosh during a press conference during yesterday’s visit.  

In response to an increased need for skilled, compassionate, and committed DSPs, Governor Shapiro’s budget is proposing $483,000,000 in increased funding. This would allow service providers like the Barber National Institute and many others across Pennsylvania to increase pay for DSPs.  

At the Barber National Institute, DSPs play a significant role in helping our adults reach their full potential. Through their work, they can interact with others and gain a sense of independence. DSPs are the frontline workers who are both caregivers and advocates for people with a wide range of abilities and needs. Mornings, evenings, weekends, and holidays you will find them in our group homes.  Yesterday’s visit by the Secretary was a true reflection of the support and admiration our community offers DSPs in response to the far-reaching impact of their work.     

Karen Groshek, the mother of a 26-year-old son with autism, expressed the importance of services for adults with Intellectual Disabilities and Autism and their families. “It is very difficult because these programs are essential for parents to continue on with their life and work and for the individuals to be happy and meeting their needs and enriched,” said Karen.  

It is incredibly important to create a strong vision for the future of the services available to adults with intellectual disabilities and their families. While we face some significant challenges, there is much promise in Governor Shapiro’s budget that would allow service providers to recruit and retain DSPs. It’s the key to mobilizing the change so many people across Pennsylvania are waiting to see.  

Governor Shapiro’s proposed budget must still be passed by the state house and senate.  If the proposed budget is approved, DSPs could see a salary increase as early as this summer. That would be a big win for everyone.