Recently Jason’s Connection’s founder, Jason Harris, spoke with Caroline White and Marty Hadge of Hearing Voices USA, an organization whose mission is to represent a partnership between individuals who hear voices or have other extreme or unusual experiences, professionals and allies in the community, all of whom are working together to change the assumptions made about these phenomenon and create supports, learning and healing opportunities for people across the country.
For more information on Hearing Voices Network USA, please visit:
For a downloadable podcast of this interview, please visit:
From time to time, we like to invite guests to share their perspectives here in our magazine. Today’s guest blog is written by Leona E. Filis, an attorney licensed in Texas and North Dakota–Ed.
Many advocates worked tirelessly to have a new financial planning tool made available to families across the United States. One such person is law clerk, Sara Wolff, who created an online petition in support of the ABLE legislation. Being a woman living with a disability, Down syndrome, Sara testified in July 2014 before the Senate Finance Committee about the struggle of fiscally responsible disabled persons who need a savings option, similar to the existing 529 accounts, without the fear of losing vital government benefits. Sara offered her personal story about the financial predicament she faced when she suffered the tragedy of losing her mother. Sara, although working, was not allowed to save money of her own and continue to receive government benefits, which was critical for her survival. Sara lobbied Congress advocating with the goal of positively impacting the lives of millions of people with disabilities.
Congress passed the federal ABLE legislation and President Obama signed the ABLE Act into law December 2014. Many states passed their version of ABLE legislation, but Ohio is the first state to implement ABLE and allow nationwide enrollment to for STABLE Accounts. For the convenience of participants, qualified expenses can be purchased by using a STABLE card (a loadable prepaid debit card).
The goal of the ABLE Act is to allow for families and individuals to save money to support individuals with disabilities to maintain their health, their independence, and their quality of life.
Per the Social Security Administration Program Operations Manual, rules and restrictions for an ABLE account include:
- One account per each eligible individual (blind or has a disability developed before age 26)
- For a minor child or person incapable of managing an account, a person with signature authority (parent, legal guardian, agent under POA) can establish and control an ABLE account.
- Anyone can contribute
- Up to $14,000.00 can be contributed each year and money grows tax-free
- Expenses include housing,* legal fees, education, health, prevention and wellness, financial management and administrative services, transportation, and funeral and burial expenses.
*If the beneficiary of the ABLE account receives Supplemental Security Income (SSI), then speak to an attorney prior to spending ABLE account funds on housing. In some cases, funds used for housing expenses must be made in the same calendar month and not held over.
One note of caution to ABLE account contributors is the payback provision.The State Medicaid agency is authorized to seek reimbursement for services provided to the beneficiary, as far back as the inception of the ABLE account. The beneficiary’s heirs can receive the remaining funds.
Leona Filis is a Special Needs Attorney who is a partner and a resource to parents by helping them navigate those tough decisions for their children.Her goal as a Special Needs Attorney is to be a partner in the children’s lives and a resource to the parents to help the children from the first step to the very last step. www.filislaw.com
In response to the recently-released film Me Before You, there have been so many comments about people with disabilities having the right to die. This film obviously does not represent all people with disabilities. But it is a common narrative.
Do people with a disability have the right to commit suicide? As valuable as life is, everyone has the choice to choose whether to live or to not keep going.
Perhaps the issue here isn’t whether or not people with disabilities have the right to die, but that people with disabilities have the right to live. That is something that is not usually afforded to people with disability across the board. Most disabled people cannot even afford the amount of care the protagonist of Me Before You can. Living with a disability is costly and leads to massive amount of poverty and an inequitable system. But even with supports through government waivers or money, that doesn’t mean those with disabilities get the chance to live.
Perhaps the issue here isn’t whether or not people with disabilities have the right to die, but that people with disabilities have the right to live.
People with disabilities have the highest unemployment rate of any group. Employers tend to fear hiring people with disabilities and if they do hire them, it tends to be for low-paying, menial jobs. If they are able to get hired, a transportation system that does not always have elevators to get down to the subway or buses that go direct to places limit their being able to get to work and move around. Even if you can drive, a lot of times there are a lack of parking spaces for people with disabilities and the ones that do exist can be taken by people who assume they are not needed and no one with a disability uses them.
Outside of that, people with disabilities, especially people with developmental disabilities, tend to lead very isolated lives. Now it is true there are programs that let people with disabilities work and be together, like workshops and day programs. These programs do help some, but also limit many others. It becomes more about a group of people who have one little thing in common. If we did that with women, gay people, African Americans, any other group, without their choice, that would be a classic definition of segregation.
So before someone with a disability chooses the right to die, let’s let them have the right to live, and live well.
Finally, with the predominant media image of people with disabilities being in some ways better off dead, a burden or nuisance to society, people that can only be helped and who bring no value other than just pulling through, it leads to negative images within people with disabilities themselves. I have always been scared to admit my disability because I am so used to autism being seen as bad. There have actually been times in the past where I did want to kill myself because of the burden to me and my family my disability seemed to create. At points I thought I had no chance to live a non-disabled normal life, like those with friends and a job and meaning. I have found out that some of that was not about me but from bigger forces.
The man who inspired Me Before You chose assisted suicide because, “He did not want to be a second-class citizen.” So do people with a disability have the right to die? Yes. But like the hashtag of Me Before You encourages people, let’s try to take down the barriers against people with disability so we all can #LiveBoldly. So before someone with a disability chooses the right to die, let’s let them have the right to live, and live well.
Jason P. Harris is the Founder of Jason’s Connection – an online resource for those with unique needs, disabilities, and mental illness. He regularly contributes to the online magazine in his own series called Jason’s View and travels the country speaking about Hidden Disabilities.
Recently Jason’s Connection’s founder, Jason Harris, spoke with Jay O’Brien, co-founder and executive director of Exceptional Lives, an organization whose mission is to connect families of children with disabilities to information and resources they need to navigate life.
In this interview, O’Brien talks about the founding of the organization, and its mission and purpose. Exceptional Lives helps families navigate complex processes and issues, like IEPs, SSI Disability, special education, guardianship, and more.
For more information on Exceptional Lives, please visit: http://exceptionallives.org/
Recently Jason’s Connection’s Content Director, Ericka McIntyre, spoke with Kilee Brookbank, student and author of a memoir with her mother, Lori Highlander, called Beautiful Scars. In 2014, Kilee was severely burned in a house explosion. The book tells the story of Kilee’s and Lori’s experiences and their family’s journey from crisis to healing.
In this inspiring interview, Kilee tells her story, and talks about the importance of family, acceptance, and the power of storytelling to help us heal.
Told together by Kilee and Lori, Beautiful Scars is a story of recovery, healing, and hope, reminding us all that we’re never powerless, never alone, and that each challenge we face helps make us the people we are meant to be. It’s what you do with each moment that defines you. A portion of the proceeds will benefit Shriners Hospitals for Children.
For more information on Kilee’s story and the book, please visit: http://kicamprojects.com/
For a downloadable podcast of this interview, please visit: https://www.podbean.com/media/share/pb-9au9e-5ff75a
From time to time, we like to invite guests to share their perspectives here in our magazine. Today’s guest blog is written by team members from the Autism Housing Network–Ed.
Madison House Autism Foundation is excited to unveil a project that has been in the works for over a year now: the new and improved Autism Housing Network (AHN).
“The AHN is the first interactive online housing community for adults with special needs and their families,” says Desiree Kameka, national housing expert at MHAF. “It serves as a hub of ideas and resources to help project starters create new housing options for thousands of adults with autism and related disabilities across the nation.” JaLynn Prince, President of MHAF, explains, “The AHN is an answer carefully planned and implemented with a delicate sensitivity for adults, young and old, on the autism spectrum.”
The AHN offers various features that can make navigating and understanding the housing landscape much easier. For example, the AHN Housing Directory gives users the ability to explore emerging and existing housing models through an interactive map and a user-friendly catalog.
If you create an account on the site, you can save your favorite housing ideas to your Favorites page to refer back to when you’re ready. You can also submit your own projects to be added to the directory and map for other users to see and share.
The AHN Resource Directory is a collection information, videos, presentations, and other media to educate parents, self-advocates, and project starters on the best practices in creating housing for adults with autism and related disabilities. Users can also submit their favorite resources to share with others.
Do you have a specific question or comment about your housing project? The Discussions Board is a great place to connect with others. The AHN community would love to help you find the answers you need to make your project a success.
We welcome and invite you to join this exciting new network that aims to make housing a reality for adults with autism and other disabilities around the country.
Visit www.autismhousingnetwork.org to sign up.
Recently our founder, Jason Harris, spoke with Kim Wagaman, co-founder of EPIC Revolution, an organization that seeks to help neurodiverse teens and young adults find friendship, support, and solidarity. The ever-evolving group is community oriented and sustained by friendships created through shared experience. Kim has specialized in coping, regulation, and social relationships with the neurodiverse community since 1995. She also teaches yoga. Epic Revolution’s unique developmental approach to therapy is youth-centered and based in trust and acceptance.
EPIC is a social club that offers a chance for neurodiverse* teens and young adults to connect with compatible peers and adult mentors in a positive and safe environment. EPIC is structured as a non-religious youth group founded on a doctrine of respect for self and for others. Their weekly evening meetups are memorable and fun and offer both physically active and quieter pursuits which foster social communication, increased self-awareness, and self-confidence. Their skilled professional adult mentors are wonderfully attuned to each club member and offer encouragement and support as well as space for personal exploration. EPIC is proud of its Leadership Team, established members who provide outreach to new, younger, and less-involved participants and plan and host games and activities.
(*Neurodiverse is defined here as including, but not limited to, persons who identify with High Functioning Autism, ADHD or other language or sensory processing differences. EPIC asserts that neurological variations are authentic forms of human diversity, self-expression and being.)
Kaary Ogard & Kim Wagaman founded EPIC in 2011 as a creative response to the need for friendship, support, and solidarity among neurodiverse teens and young adults. The ever-evolving group is community oriented and sustained by friendships created through shared experience.
Kaary is a speech pathologist specializing in autism and neurodiversity since 1998.
Kim has specialized in coping, regulation, and social relationships with the neurodiverse community since 1995. She also teaches yoga.Their unique developmental approach to therapy is youth-centered and based in trust and acceptance.
For more information on Epic Revolution, please visit: http://www.epic-revolution.com/
For a downloadable podcast of this interview please visit: http://jasonsconnection.podbean.com/e/celebrating-different-ways-of-being-meet-kim-wagaman-of-epic-revolution/?token=34f923af999eb0429c1e9a21906fd3a9
From time to time, we like to invite guests to share their perspectives here in our magazine. Today’s guest blog is written by Jasmine Leiser, journalist, student, and artist at the University of California Berkeley.–Ed.
I have cerebral palsy, hyperhidrosis, asthma, and bipolar disorder. I have a morbid sense of humor and, for as long as I can remember, life’s been a bit of a joke that I’ve held at a distance.
I’ve always had a “manic” personality. I like making other people laugh; the life of the party, the butt of the joke. I was the chubby little kid in the grocery store who asked strangers in line what they were making for dinner — and whether they wanted to be my friend.
I’m 21 now and my life has been centered around the medical model of disability. The medical model treats disability as a series of symptoms to be addressed. The objective is mobility, autonomy, and independence.
The medical model treats disability as a series of symptoms to be addressed.
As a child I practiced walking up stairs, doing leg raises, and touching my toes. I played board games with my parents to develop the dexterity in my hands and fingers — delicate, little child hands with soft pink nails that learned how to play the guitar in preschool and gently turn the pages of hardback books.
When I was quite young, I remember lying on an padded blue therapy table that looked out over a large grassy lawn. I laid on my side, and lifted my left leg against the resistance of my therapist’s warm palm. This exercise was intended to strengthen my hip abductors. In physical therapy, the progress is gradual, see only after hundreds of daily repetitions. Physical therapy taught me patience. In therapy, I moved slowly and deliberately; practicing muscle control as I walked, strapped in and secure, on the treadmill and stepped up and down from a bench. Physical therapy taught me how to stretch and how to work with my body, not against it.
My parents have kind eyes and warm hearts; they are the best kind of advocate for a young woman with disabilities in the public school system. We set up a 504 and then IEP (Individual Education Plan). I did physical therapy during recess, and took extra time on tests as my sweaty hands ripped through sheets of lined paper. In kindergarten I wore leg braces, and twister straps that clipped onto my tennis shoes, over colorfully patterned leggings. I had round Harry Potter glasses, before they were cool, circa 2000. My parents were instrumental in making sure the school had accessible field trips. I didn’t understand that I was disabled. I wasn’t sure why I needed to wear some extra hardware.
Too often, physical disability is conflated with a lack of academic potential; challenging myself academically, from a young age, instilled confidence, and a strong sense of self.
When I was in 3rd grade, my mother asked for me to be evaluated for the Gifted And Talented Education program. The principal resisted. My mother insisted. I tested into the program. Too often, physical disability is conflated with a lack of academic potential; challenging myself academically, from a young age, instilled confidence, and a strong sense of self.
I read vicariously and I wrote my own stories in lined composition books, illustrated with magic marker. I never drew my braces. Instead, in all of my stories, I just pretended that I could fly. At 12, I was highly creative. I built myself an imaginary world and retreated into it for most of 6th grade.
In 7th grade, my Life Science teacher came to class with an anxiety hamster. It’s name was Philmore and it sat perched on her shoulder. I distinctly remember that she favored yellow Hawaiian T-shirts and that her classroom smelled like sulfur. She encouraged me, and my wheelchair-using friend, to leave the classroom during the segment on sexual education. Physically crippled bodies are often thought of as non-sexual.
When I was 17, I dated a straight boy who said that he liked my disabled body because he liked to hold my hand. This struck me in my gut, and I began to really question the caregiver, care receiver relationship in my partnership with an able-bodied adolescent.
It wasn’t until I came to Berkeley in the summer of 2013 that I realized that disability identity existed outside of the doctor’s office.
It wasn’t until I came to Berkeley in the summer of 2013 that I realized that disability identity existed outside of the doctor’s office. At 18, I became aware of the Disability Rights and Independent Living Movement. At 19, after a depressive downswing, I wrote a column on disability for my college newspaper. The intent was to demystify and breakdown the stigma.
At 19.5 years old, a stranger on the street tapped my shoulder from behind. It was rainy in Berkeley. I was listening to headphones and minding my own business. I was startled and turned around. She was older, maybe 45 or so. When I said “Can I help you?” she started crying and said that she was just so proud of me for getting out of the house. This stranger called me “her inspiration” because I, quite literally, walked outside. It was comically ridiculous.
At Cal, I study British history. Which essentially means that I navigate libraries with ease, and I always buy used copies of my books because I tattoo them with highlighter to the point where they just can’t be resold.
I am an historian, and historians like facts. I really detest guesswork; which, if we’re being honest here, is a lot of what psychiatry, psychology and mental health care is.
In the disability community, folks are often hung up on labels: what’s the next diagnosis, the next treatment option, the newest therapy. These labels come with stigma. This past February, I was diagnosed with bipolar disorder.
When I was diagnosed with bipolar disorder, I immediately became afraid of the bipolar social trope. I was afraid that without a linear counter argument the stereotypes that I was socialized to believe about bipolar disorder would become inevitably become true.
Disability identity is about reclamation…. My crippled narrative is a story of resilience.
Disability identity is about reclamation. For me, this reclamation is appreciating my holistic self. Confronting my new disability diagnosis has been about letting go.
It’s about recognizing my internalized ableism. It’s about acknowledging the validity of my own, non-visible, disability identity. My crippled narrative is a story of resilience.
I’m ready for the next chapter.
Jasmine Leiser and Ace Perez are journalists, students, and artists at the University of California Berkeley. Jasmine and Ace are coffee-drinking, co-directors of the rad org Art for Consciousness. Contact Jasmine, firstname.lastname@example.org and Ace at email@example.com.