After graduating from high school and realizing college wasn’t the right path for her, Amy—who has a learning disability—knew she was ready to begin building her career. She started with typical jobs for young adults, working at Bath and Body Works and Giant Food for several years while taking classes at the local community college until a chance meeting in the college parking lot changed her life.

Amy encountered a woman in the parking lot and engaged in some polite small talk. Serendipitously, the woman’s daughter also had a disability and was currently seeking a job. She had contacted a program called Project SEARCH, and the woman passed the information for the program along to Amy.

Project SEARCH is an employment program for people with disabilities that aims to train and place each participant in competitive and rewarding employment through a series of internship rotations. As an added bonus of the program, the placements help demonstrate to businesses the long-term value of hiring people with disabilities and the wide range of jobs they can be successful in.

Amy enrolled in the program and began her placements, including one at the Montgomery County Department of Finance Treasury Division.

Amy and her assigned employee mentor MaryAnn got along right away—she even had chocolate and a pen ready for Amy’s first day. They got to work learning about homestead compliance and correcting records in the department’s system. Amy learned what it took to succeed in an office job and focused on building skills and making herself an asset to the department.

Amy chose to pursue a Treasury Department job after all of her rotations were done and was thrilled to secure a full-time, competitive job there where she thrived in an environment where people believed in and supported her to succeed. Amy notes “When I first got hired, I was so grateful. I didn’t say it, but inside deep down because I didn’t really know if it was going to happen. I felt really focused.”

Now 32 years old, Amy is still at the same job enjoying her work, and is optimistic about what her future holds.

“I like everyone I work with. They like working with me too. I am most proud of working on property tax refunds. I research accounts ahead of time to figure out who is eligible for a refund, and then take their information and add the record into our system so it can move to the next step. I’ve gotten better at it over the course of my time there and I like working in Excel.

I’m coming up on my 10-year anniversary which makes me proud. I do think about the future and maybe learning more skills. It’s been quite the journey.

I have a job coach I see during work, but I live by myself. I have a one bedroom and my parents help me with things and have been supportive. They retired to Florida and I miss them a lot. They come up and visit and I fly down to stay with them.

When I’m not working, I like to run. It helps me. I don’t get to do it often because of my job, but anytime I can do it, it helps me think better. I like to hang out with friends—it’s good to be social.

Having a job allows me to be independent, buy groceries, pay housing expenses, and go out to dinner with friends.

I hope people don’t give up on their dreams and their goals. It’s very important to work and try to make a good life for yourself.”

Ellen Feldman has a passion for increasing research in the intellectual and developmental disabilities (IDD) field and continuing her ongoing advocacy in that arena. She currently serves as the Central Region Vice President for The Arc New York, and as a member of the Board of Governors and Executive Committee.

So, what inspires Ellen to devote her time and energy to this field? The answer is simple – her son.

Ellen’s son, Matthew, is 40 years old; he receives supports and services through ACHIEVE, a chapter of The Arc, and has lived in a group home since he was 21. When Matthew was 14 months old, he was diagnosed with IDD and several associated symptoms – all with an unknown cause.

“We went to see the head of pediatric neurology at Columbia Presbyterian Hospital many years ago, and they couldn’t tell us what caused Matthew’s IDD,” Ellen said. “They couldn’t give us a real diagnosis. They basically told us that he’s going to be significantly delayed – he’ll never go to college and he’ll never drive a car. This news was crushing, of course. So we stumbled our way around, got him into early intervention programs, and did whatever we could.

“We’ve been down the path of lots of different hospitals and development centers, always looking – not for cures – but for ways to help him live his best life,” she said.

Ellen reached out to The Arc New York network for recommendations of an objective third party that might help her gain more answers. Ellen connected with a geneticist at Columbia Presbyterian Hospital, and was sent an at-home genetic testing kit. Her family did a series of saliva swabs and returned the package to be analyzed.

On Labor Day Weekend, she received a call that her son has a rare genetic disorder called SynGAP1.

There is currently no cure or specific treatment for the underlying condition that causes

SynGAP1. However, learning more about the symptoms related to the genetic disorder can help individuals find relief and better understand how to manage them. For instance, Matthew has been having staring seizures for a while, and when he comes out of these seizures, he has aggressive episodes.

“There was an incident where Matthew was staring at another individual, staff asked him to stop staring, and he wouldn’t stop,” Ellen said. “This continued until he all of a sudden got aggressive and angry. We now know that when you come out of a seizure, there’s a period of delirium where you’re confused and don’t know what just happened – this confusion triggers an aggressive response. Recognizing these symptoms and being calm instead of admonishing Matthew can help prevent these situations from happening.”

Genetic testing can also lead to the discovery of secondary conditions connected to SynGAP1. Ellen learned her son is at a higher risk of colorectal cancer, and as a result, he’s going for his colonoscopy and endoscopy at the age of 40 instead of 45, the recommended age for those not at risk.

GENETIC TESTING

Ellen understands that some might be apprehensive about genetic testing, especially when it can cost upwards of $3,000. However, she wants to share an opportunity for individuals to potentially get free and convenient genetic testing at home.

She discovered Probably Genetic, a company offering free genetic testing paid for by sponsors. The company’s website provides people with a questionnaire to determine if they are eligible for free testing. A physician reviews the answers, and if the person is considered to be a good candidate, they are sent a test that only requires a saliva sample. The test is returned with prepaid shipping and analyzed in the lab. In about eight weeks, a geneticist calls to review their clinical genetic report.

The SynGAP Research Fund also notes these genetic testing options:

• Ambit provides free access to genetic counseling and testing to all patients who qualify. Testing is available in all 50 states and is open to all ages. Qualifications include: children age seven and under with at least one seizure; or anyone over seven with at least one seizure, one developmental delay and on at least one seizure medication.
• Invitae’s Behind the Seizure free genetic testing program is offered to any child in the US or Canada under the age of eight years old who has had an unprovoked seizure. Australian residents can visit this website.

SYNGAP1 mutations are suspected to be the underlying cause of approximately 1-2% of all Intellectual Disability (ID) cases, making it one of the most common genetic causes of ID, similar to more well-known syndromes like Fragile X, Angelman and Rett Syndrome.

SynGAP1 mutations are significantly underdiagnosed. The disorder was only discovered in 2009, and testing didn’t begin until 2015, so any genetic testing completed before 2015 would not have shown SynGAP1.

Additionally, many families receive a diagnosis like autism, intellectual disability, or epilepsy and stop their diagnostic search, thinking they have reached a conclusion.

“I stopped looking for a diagnosis and a cause years ago and just focused on what I could be doing for my son,” Ellen said. “The more information we can load into research databases the more data there is for researchers to use. We’ve got to continue looking ahead to the future and always be thinking of what more we can be doing.”

 

 

By Evelyn Baron, written in 1991

In 1964, at age 40, I was happily married for 17 years and the mother of three children—a daughter, 14, and sons, seven and 10. With all three children in school, I decided to enter college to fulfill a lifelong dream. Shortly after I started, I found out I was pregnant. I was stunned. Life changed for all of us once my baby, Bruce, was born. But my desire to attend college never waned. I started taking courses on nights, weekends, and in the summer, juggling my responsibility to four children and to my aging parents.

When Bruce was two, he wasn’t walking, but I hadn’t been alarmed because my third child had also walked late. I took him to the pediatrician. After running some tests, the doctor told us Bruce had Down syndrome. The doctor then described that Bruce would be like a puppy dog we would pet.

I was in total shock and don’t remember how I drove home. The next few days remain a blur as his words rang over and over in my head. My beautiful baby, how could he be likened to an animal? Would it be different now that we found out he had Down syndrome? No way.

We continued to treat him the same, he was no different than he had been the week before his diagnosis. I can still hear my third child saying, “No matter what, he’s my brother…”. I also remember well my response to an acquaintance when she asked if I would place him in an institution. I let her know that this was my baby she was talking about and that he had his home with us, just like any of our other children.

Our children were wonderful—they continued to teach him and to expect from him all that he could, and he prospered and grew from this loving environment. Our friends and families rallied to give us respite when we needed them. He was eager to learn at his own pace, and we were always there to give him the assistance he needed.

Back at college, I started taking courses to learn more about disability to help me in raising my child. I finalized my major as rehabilitation and started to take internships at facilities where there were people with disabilities.

Finally, after attending classes part-time for 10 years, I had amassed the needed 130 credits and graduated Cum Laude. I watched the local papers to put my education to work. I saw an ad for an executive director for The Arc in Enfield, Connecticut. When I applied, the parent volunteers who posted the listing explained how I would be their first Executive Director to start much-needed programming.

With little knowledge of how to get programs started but strong determination, I proceeded to initiate numerous programs and services. Wherever there was a possibility of a grant, I was there, and we were most times successful. For the next 16 years, I found myself working long hours, meeting with families and boards of directors, and working closely with town, state, and federal legislators and school systems. It was always a labor of love. As Bruce’s mother, I would often boast of his and others’ achievements to groups when I spoke to help them understand how these people had the right and ability to live and work in the community. We started group homes where neighbors at first were apprehensive. I remember a meeting in the home of one where I was confronted by an angry group. I let them know our people would be good neighbors and they had nothing to fear. I let them know how as a mother, what had happened to me could happen to any of them, and it would be them begging to give our people a chance, just like I was. They accepted the homes and never had a problem again. Before I retired three years ago, I succeeded in building for Enfield a large new building to house their many programs. No more church basements, old schools—they have their own beautiful building.

Bruce has always amazed us with his extraordinary level of understanding and compassion. We threw out the books long ago that said how limited he would be. After many years of Bruce and I trekking 60 miles to Sunday school (no other schools that were closer to us would accept him), at 13 Bruce had his Bar Mitzvah, something he wanted. When he said the prayers he studied, he stood there so proudly. Every one of our 200 guests, including the Rabbi and Cantor all cried for joy as he took his rightful place within the congregation.

We have tried for Bruce to have as near a normal life as possible. He’s always had many friends, went to camp, junior, and senior high school, and when he graduated, he started to work as a bagger at a local market, where he still works. They continually tell us what a fine worker he is. There are now many people with disabilities working, and it makes me proud that I was at the forefront of helping this to happen.

Bruce, now 25, continues to live at home. He remains an integral part of our lives.

When Bruce was diagnosed, we received the news as a tragedy—but over Bruce’s life, we realized the real tragedy was the limitations people placed on him.

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Five years after this was written, Bruce passed away.

Bruce would have given the shirt off his back throughout his life to care for someone, so his family continued his legacy of giving even after his passing through organ donation. One recipient, Tom, was given Bruce’s liver and became an unofficial part of the family. He remains close with them to this day and thanks Bruce and Evelyn for his gift of life.

Hundreds of community members attended Bruce’s funeral and spoke about how he influenced their lives and shattered their misperceptions. Bruce’s life—and Evelyn’s fierce advocacy—fundamentally changed their community and helped move the needle on people’s perceptions of what is possible for someone with a disability when they have the support of family and community.  

 

By Nicole Jorwic, Senior Director of Public Policy, The Arc

As we rally around the Home and Community-Based Services Access Act (HAA), a new bill in Congress that will transform how people with intellectual and developmental disabilities live their lives, it’s siblings like Nicole and Chris Jorwic that lead with the passion to make this change a reality.

In the second installment of our two-part blog series, The Arc’s Senior Director of Public Policy Nicole Jorwic shares what drives her passion.

Nicole: Like Marty, my work is also rooted in my love for my brother and our joint passion to ensure that everyone has access to the supports that they need. My brother Chris is 31 and receives Medicaid HCBS services in Illinois. Even though he was born decades after Jud, with a lot more options and opportunities, my family has had to fight hard for inclusion in the classroom and for the services that he needs. But it is never far from my mind how different his life could have looked if we were from a different generation. Chris certainly could have ended up in an institution, a risk that still exists for my family.

Why is that still a possibility? Because those institutions are still open in 2020. 36 states still have institutions (sometimes called state schools, state-operated developmental centers, or training centers) where people with IDD live segregated lives away from their families and communities. While media has shined a spotlight over the years on the atrocities that exist behind these walls, our society still tolerates their existence and the placement of people with disabilities in these inhumane places. The pandemic has caused grave danger to people stuck in institutions, but even before COVID-19, other dangers lurked in these dark places.

We must do better and expand access to home and community-based services because they are what people with disabilities and their families want and need. Those services have been a saving grace for Chris and our whole family. The inclusion in the community that these services afford to Chris is the same thing that my parents have been fighting for Chris’ since he was in school, and what drives Chris in his own advocacy work to ensure that his “brothers and sisters in disability” have access to what they need.

Chris has also had times when he didn’t have the services that he needed, when my darkest fears were around what if we can’t find what he needs. Those times were extremely difficult for our whole family, but mostly for Chris, because it left him stuck at home, with nowhere to go, and no way to use his voice, leading to very low moments.

Chris was facing a low time back in 2017, when The Arc network was fighting so hard to protect access to Medicaid HCBS. The huge Medicaid cuts proposed in Congress would have disproportionately impacted HCBS because they’re “optional” services and states don’t have to cover them. States do have to cover institutional services and I knew that cuts to Medicaid would mean fewer HCBS and more people like my brother being forced into institutions. While I worked in Washington on the policy threats, I would call home and hear the sounds of Chris having a rough day without the services he needed. I would take those moments when I was close to tears because I shared my brother’s frustration, and turn it into fuel to keep going, something I know Marty and others before me have done. It reminded me why the push to protect Medicaid was so important, but also how much progress we still need to make.

I knew what we needed to do not only from my personal experience but also from my experience working for the state of Illinois, a state with over 20,000 people on the waiting list for HCBS and 7 institutions. It’s even more clear now, after the fights in 2017 and the COVID-19 pandemic, that the only way to truly transform the old system, to close the institutions that still exist, and end the waiting lists that almost a million families are stuck on across the country is to address this issue head-on. Requiring Medicaid to cover HCBS has been a driving focus of my work since I joined The Arc.

So, when the attacks on Medicaid subsided in 2018, we turned our focus towards that goal. We worked hard to get coverage for HCBS into the universal health care proposals—something that hadn’t happened before it finally did in 2018. And then we pivoted specifically to the issue of requiring Medicaid to cover HCBS. We were lucky to have champions on Capitol Hill like Representative Debbie Dingell and Senator Maggie Hassan who both understand this issue personally, and we appreciate their leadership and openness to working with us to get this right.

And we’ve gotten it right with the HAA. The dreams of our families and our founders and much of what we have fought for as volunteers and staff at The Arc would become reality.

We need this bill to pass now. In Illinois in April, the National Guard was called into two of the state institutions because too many staff and residents had been diagnosed with COVID-19. People with intellectual and developmental disabilities have been infected and died at higher rates. And every person with a disability and their friends, family, and staff have had their lives turned upside down. This bill would ensure that we have the infrastructure to at a minimum protect people from this kind of public health threat, but also give people the services to thrive, and not just survive.

The work we will do over the coming months, and possibly years, to get to the passage of the HAA will certainly be some of the most important in The Arc’s 70-year history. We will fight because the investment in HCBS is what we need to fully realize our mission, for Jud and for Chris and all the people with disabilities who want a full life in their homes and communities.

Get involved in this effort with me and Chris. Sign up to take action with The Arc, and tell your members of Congress why this bill matters.

 

 

 

The Arc of Sedgwick County in Kansas has something many chapters do: a self-advocacy program. And their program is wildly successful, in part because of its focus on volunteerism. Members don’t just learn how to advocate for themselves effectively—they take an active role in constantly giving back to their community. As a result, they have built lasting relationships and helped the programming of the entire chapter grow stronger. Read more from their Executive Director Kevin Fish about how Sedgwick’s “Shooting Stars” are changing their community for the better.

Tell us about the self-advocacy programs you run at The Arc of Sedgwick County.

The “Shooting Stars” self-advocates started as the Young Employable Adults (YEAs) back in 1972.  The focus was to help them develop self-confidence and independence and reach their fullest potential.  Early efforts were to encourage and promote community employment. Over time it was expanded as we explored what it meant to advocate for yourself.

The “Shooting Stars” focus heavily on volunteerism and giving back to the community. What types of activities do they do and what are some of the positive results you’ve seen of this approach?

Our self-advocates will help with our Youth Activity Days for our Circle of Friends program. They run games and other activities and help prepare lunch for 1100 students attending our annual wildlife park day. 

They sponsor and run a free Halloween trick or treat event for neighborhood kids. They sponsor photos with Santa and help with preparations for The Arc’s Lights drive-through Christmas display. They host and help run an Easter egg hunt for children with IDD and their siblings. They assist with almost every special event The Arc does each year.

The community’s appreciation for the work they do helps them gain confidence and feel connected. They enjoy the happiness they give others and how kids look up to them. Many self-advocates have gone to advocate at the state capitol and presented to the City Council and the County Commission. Members have served on The Arc’s board, presented monthly reports to the Board, and served on various committees, boosting their pride in themselves.

What is the involvement level of your staff in supporting the efforts of your self-advocates? How does the group decide what types of activities they do and how they structure their events?

Our staff help lead monthly discussion forums and help organize monthly potlucks and quarterly appreciation events for our self-advocates. During our forums and potlucks, we will discuss upcoming events and activities and what they want to do. Many of the activities have become a tradition! They are invested and feel a sense of ownership and pride in what they are doing. For the forums, staff will also prepare some interactive educational components on topics like finance, work expectations, relationships, and daily living.

It’s hard not to mention the current health crisis affecting us all and the importance that supporting each other has taken on in the last few weeks. Does the group have any plans to volunteer in your community the coming days, and if so, what? Has the self-advocacy programmatic structure you’ve set up helped provide any stability, socially or otherwise?

For a group that is so active, not only with The Arc, but within our community, the current pandemic has made life a challenge. Most all of them are no longer working with the state-wide stay at home order.  Most every event and activity at The Arc has been cancelled or postponed for the next month.  Many of the entertainment facilities and churches are all closed, eliminating places they like to go or volunteer after work. This change in routine is difficult. What they see and hear is creating anxiety in many. The isolation is creating loneliness. Within our self-advocate group, we have been trying to encourage them to call a friend, send a note an email, or reach out through social media. Especially for those who live alone, we want to make sure people are connecting regularly. 

What should other chapters know who are interested in starting and growing a self-determined self-advocacy program?

Helping your self-advocates find their voice, take charge of their lives, and advocate for themselves and those around them is part of our mission. A passionate and active self-advocate group can make a big difference in not only your organization, but also your community and state. The development of our self-advocate group to help them reach their fullest potential truly became a way for our chapter to work towards reaching its fullest potential. Countless programs and events were created or evolved based on what our self-advocates wanted, needed, or wished they had. They provide more than manpower. They are invested, passionate, and inspired and help us continue to feel the same way too.