The prospect of air travel can sometimes seem too daunting a challenge for someone on the autism spectrum. The idea can be so discouraging, in fact, that many people choose to forego flight altogether. Access to air travel is important because it allows individuals with autism and their loved ones to participate more fully in community. It enables them to visit family and friends on meaningful occasions and experience new places alongside the general population.
That is why Madison House Autism Foundation has partnered with American Airlines to help make air travel more accessible to those on the autism spectrum and their caregivers. We hope you’ll find these tips and resources encouraging and that they help make air travel possible for you and your loved ones.
5 Air Travel Tips for Travelers with Autism - YouTube
AIR TRAVEL TIP #1: FAMILIARIZE YOURSELF
For most people, air travel is likely to be a fairly novel experience. While the ability to adapt to change varies from person to person, we know that those on the autism spectrum tend to have more difficulty re-calibrating to anything that falls outside normal routine. Knowing that the airport environment can trigger anxiety in even seasoned flyers underscores the importance of familiarizing our friends with autism with air travel well before they fly. Here are some ways you can begin:
• Participate in a flight rehearsal program
Airports across the country host rehearsal programs like Wings For All where individuals with special needs and their caregivers can practice air travel. Many people choose to attend the event annually, even if they have successfully traveled by air, to maintain familiarity with air travel.
When we spoke with Andrea, a mother who regularly participates in Wings for All with her daughter, she shared with us how rehearsal programs like these have changed her family’s life. Now, her 20-year-old daughter Rachael, who was previously too frightened to fly, looks forward to visiting family in Boston. “We can go whenever we want now,” she said. Watch our video about the program to learn more.
• Visit the airport
You don’t need to participate in a rehearsal or even have a plane ticket to make a trip to the airport. Consider visiting to get accustomed to the airport environment and even asking questions face-to-face with airline and TSA staff.
• Create a visual tour using photos and videos
If a rehearsal program is not available in your area, or you want extra exposure to air travel process without having to visit in person, consider creating a storyboard with photos or watching videos about air travel. Review them as often as is necessary to become comfortable with the steps of air travel.
• Go online to learn about airport layout, parking, and terminal amenities
Knowing where to park and what amenities are available at the airport before you arrive takes the guesswork out of your day and saves time. Visit the departure and destination airport websites or use ifly.com to gather useful information about your airport.
• If possible, book a short practice flight
Booking a short and easy flight can help prepare you for longer, more challenging trips that might require hours in the air and/or layovers and connections.
AIR TRAVEL TIP #2: IDENTIFY CHALLENGES
• Take time to identify triggers
Airports can be sensory overload for anyone, especially during busy times for travel like the holidays. For people with autism, the sights, crowds and sounds may be overwhelming. As you familiarize yourself with air travel, take special note of things that may trigger anxiety.
• Think about appropriate coping strategies
For each trigger you identify, consider what might help distract you or your loved one from the disruption or reduce it’s effect on overall well-being. These could include wearing sunglasses or noise-cancelling headphones or keeping a comfort object with you. Also, consider bringing snacks or portable entertainment.
• Make note of accommodations or support that might mitigate challenges
There may be some challenges that cannot be overcome with distractions alone. Fortunately, there are things the airline or TSA can do to help ensure stress levels stay manageable. In a busy environment like an airport or a confined space like an airplane, everyone has an interest in ensuring that travelers feel safe and taken care of so they can remain calm and collected. While this is not a comprehensive list, these are just a few of the things that the airline and TSA may be able to accommodate:
– A quiet place to check-in or to take a break
– Personnel to accompany you through the airport
– A wheelchair
– Expedited screening
– A special carry-on allowance
– A tour of the plane
– A specific seating assignment
AIR TRAVEL TIP #3: COMMUNICATE YOUR NEEDS
• Notify your airline at the time of booking
At the time you make your reservation, be sure to notate any accommodations or assistance you want to request. You can also call the airline after booking and speak directly with an agent who can answer questions about accommodations. The airline will then make note of anything they need to prepare for your arrival and you can rest assured that everything is already in place the day of your trip.
One of the most confusing steps in air travel is the security screening process. Luckily, TSA Cares is available to answer all questions and even provide support and accommodations from the moment you arrive at the airport to finding your gate. If you are unsure about what you can or cannot take in a carry-on, you need to request special exemption for a medically-necessary item, or you’d like assistance getting through the checkpoint, call the toll-free hotline at (855) 787-2227.
For one-on-one assistance, ask for a Passenger Support Specialist (PSS) who is trained to help passengers with special needs. They will arrange to meet you at the airport and help you through the entire process.
• Ask the flight crew for additional support
Once you board the aircraft, let a member of the flight crew know of any extra assistance you may need during the flight. They can answer any questions to help extinguish fears about flying and even give you a tour of the plane when you pre-board. It may be helpful to communicate what the symptoms of stress may look like so they can be attentive during the flight and intervene to assist you. Let them know what they can do to help reduce anxiety, should it creep up during the flight.
AIR TRAVEL TIP #4: BE PREPARED
When preparing for air travel, there are some necessary items you need to bring and rules to comply with. There are also optional things travelers can do to increase ease and comfort.
Examples include a driver’s license or other state identity card, a U.S. passport, or a permanent resident card. Be sure to keep it in a secure, but accessible location as you will likely need it multiple times before boarding your flight.
• Prepare a carry-on
Make sure to bring a backpack or other small carry-on to store important information, medically-necessary items, and the things that will ease anxiety throughout the journey. Make sure items comply with TSA restrictions and your airline’s carry-on requirements.
• Dress comfortably
Avoid wearing belt buckles, shoes with laces, and jewelry for a more hassle-free screening experience.
Consider including travel details, emergency contacts, and other information that may help others understand your situation. You never know when you may need extra help or understanding from the people around you.
• Be well rested and arrive early
Traveling can be draining. Getting good sleep and arriving extra early will help reduce stress. The generally recommendation to arrive at least one 1 hour before domestic flights (or 2 hours before international flights) may need to be modified to ensure extra time for breaks, pre-boarding, and other special assistance.
AIR TRAVEL TIP #5: HAVE FUN
Although traveling by plane may come with some challenges, air travel can also be very rewarding. The ability to fly brings us closer together. It enables us to reunite with loved ones thousands of miles away in a matter of hours. It makes the whole world accessible for our curiosity and exploration.
It’s been just over a hundred years since humans have learned to fly, and you are one of the few in human history that gets to experience it! It can be quite thrilling to see the landscape from the sky, glide through cloud formations, and watch the sun rise and set from the air. We hope these tips will help you enjoy the view!
Madison House Autism Foundation asks you to urge Your Senators to Vote NO on the Tax Cuts and Jobs Act. As members of the Consortium for Citizens with Disabilities, we are sharing the following Action Alert:
On November 17, the House of Representatives passed its version of a tax bill. The Senate is prepared to act on its bill right after they return from Thanksgiving recess the week of Nov. 27. Both bills are extremely harmful to people with disabilities. A conference committee may have to work out the differences between the bills, meaning that provisions in either bill could end up in a final tax bill. Both bills are harmful because they:
Increase the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.
Lead to cuts to Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to reduce the deficits and debts incurred by tax cuts.
While the House tax bill does not directly cut Medicaid, the actions it takes will have the same or even worse effect on Medicaid and other services and supports for people with disabilities.
The House passed a tax bill that has many provisions that harm people with disabilities and their families by eliminating the following tax deductions and credits:
Deduction for high medical expenses, which is critical to many people with disabilities and their families
A $2,400 tax credit businesses can get when hiring someone with a disability
A $5,000 tax credit for businesses that make their businesses accessible to people with disabilities (Architectural Barriers credit)
The incentive to contribute to non-profit agencies that often provide support for people with disabilities and their families (charitable giving)
The Senate has proposed a bill that is even worse. It includes a provision to repeal the individual mandate to obtain health insurance. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more. Repealing the individual mandate will:
Result in almost 14 million people losing health care coverage (according to an analysis by the Congressional Budget Office).
Increase health insurance premiums for those purchasing coverage on the exchange by at least 10% for the unforeseeable future (also according to an analysis by the Congressional Budget Office);·
The CBO analysis also says the repeal of the individual mandate will save approximately $330 billion (because of the large number that will not be insured) over ten years. This money will be used to pay for making the corporate tax cuts permanent and to cut to the tax rate for corporations and individuals on the upper-income scale.
We have a VERY short timeline to stop this very harmful and unpopular legislation. The Senate is scheduled to vote on its Tax Cuts and Jobs Act the week after Thanksgiving, the week of November 27.
Contact your Senators over the Thanksgiving recess.
Call your Senators. Call the Capitol Switchboard number 202-224-3121 and ask for your Senators.
The CFC is the world’s largest and most successful annual workplace charity campaign affording all federal employees and retirees the opportunity to improve the quality of life for all.
Each year, the CFC provides millions of dollars of support to eligible non-profit organizations that provide health and human service benefits throughout the world.
How can I participate?
All current and retired Federal employees can make a pledge online via the centralized giving platform. Donors can choose a payroll deduction or a one-time or recurring monthly pledge via a credit card, debit card, or direct bank transfer. The ability to give through payroll deduction enables our supporters to give a little bit each pay period, adding to a significant contribution at the end of the year.
Furthermore, Federal employees can broaden the impact of their gift by pledging volunteer hours in addition to monetary donations.
Why do Adults with Autism Need my Help?
In the next ten years, 500,000 children with autism will age out of state-sponsored supports as they turn 21. As a result, the future for our friends with autism is bleak. Due to the lack of resources available, adults on the spectrum currently face:
a severe lack in housing options that facilitate development and growth
high rates of depression and anxiety
high risk for other diseases including diabetes and heart disease
a nine-fold increase in suicide rates
shorter lifespans by an average of 16 years
Without our intervention, these children and their families will continue to experience unacceptable and preventable outcomes and we will miss out on the valuable contributions they could otherwise make.
Make a Difference
Our mission at Madison House Autism Foundation is two-fold:
We find, promote, and develop new solutions for a better future.
As part of that two-fold mission, we are building a community of care where those who are often left at the edges of society are woven back into tapestry of our shared life. Madison Fields makes agriculture-based experiences accessible to people of all ability for learning, vocation, recreation, and healing.
Support for Madison House Autism Foundation allows us to create and sustain programing like the therapeutic riding program at Madison Fields which serves children and adults with special needs, wounded veterans, as well as the wider community.
With your support, we can co-create a future where we all thrive together.
Madison House Autism Foundation, the Arc of Montgomery County, The Arc of Prince George’s Co and The Arc Northern Chesapeake Region are teaming up with American Airlines, TSA, and the Metropolitan Washington Airports Authority (MWAA) to host Wings for Autism® at Reagan National Airport. The goal of the event is to provide a realistic travel experience for individuals with special needs and their families to learn more about air travel and ease the stress of flying. (Flyer is attached to email)
In partnering with Madison House Autism Foundation, American Airlines is delighted to include 15 adults with autism (age 21+) who would like to experience a realistic practice run of the airport experience (sans the actual flight). This will include entering the airport, navigating the terminal, getting boarding passes at the ticket counter, checking bags, passing through TSA security screening, and boarding an aircraft at a gate. We hope that you and your loved ones can attend.
Time: 9 am to 11:30 am (Timeline available upon request)
Please have interested individuals contact Steve Robinson at email@example.com to register and to provide the following for everyone attending: Name, Date of Birth and Gender, so AA can create a boarding pass. We are asking that each individual participates with just one caregiver, but special considerations can be made in advance. Please let Steve know if you or your loved one must be accompanied by more than one caregiver.
There will be many volunteers to make the day run smoothly. Together with AA, we will learn how to serve individuals with autism better when they choose to fly. We hope you can join us for this fun and educational traveling experience.
Air Travel Tips for People with Autism and Other Disabilities
Plan ahead as much as possible. About 72 hours before your flight, call the TSA Cares hotline at (855) 787-2227 and explain what supports you may need. Use IFly to find useful information about the airports you’ll be in. Review your airline’s policies online, and consider printing out the relevant pages or a notification card. Review your rights under the Nondiscrimination on the Basis of Disability in Air Travel regulations.
Even if you don’t have much notice, get in touch with the airline as soon as you can. Tell the airline what accommodations you need, preferably when you book. Ask for a TSA Passenger Support Specialist as soon as you reach the security line. You can (and should!) do this even if you didn’t have time to call TSA Cares. Airlines like advance notice, but, unless you have a large group or require oxygen, most of them don’t require more than an hour to provide accommodations like advance boarding and guaranteed seating. Ask the ticketing or gate agents what accommodations are available to you. You deserve to understand all of your options!
Notify every one of the accommodations you need. Even if you called ahead, find a gate agent and tell them you need advance boarding or guaranteed seating together as soon as you reach your gate. Tell the flight attendant about any accommodations you need while on the plane. If you need help getting to a connecting flight, tell the attendant that too. He or she can help make sure the right employee is there when you get off the plane or direct you to the next gate agent who will take care of it.
Have at least one printed copy of your entire itinerary and any help you need. Various airline and airport employees will have an easier time helping you find your way through the airport or getting you to the right people if you have a printed copy of your itinerary to show them.
Become familiar with the airport and parking situation before your trip. This could alleviate the stress of getting lost or confused later on.
Dress to go through TSA. Wear clothes that are comfortable and easy to go through security (e.g. shoes that slip on and off as opposed to boots that need to be laced, pants with elastic waists that don’t require belts, no jewelry, etc.)
Consider booking a short practice flight. In some circumstances, individuals and parents have reported success in taking short practice flights to nearby cities. While this is not an option for all, it is a low-risk way to gauge an individuals tolerance of riding in an aircraft. The rental cars available at the airport provide the option of driving home if flying back proves too stressful.
Rehearse the day. Many parents and caregivers have found rehearsing the process of flying to be extremely helpful. If you find a Wings for All or Wings for Autism program in your area, consider participating one or more times. If you don’t have the opportunity to participate in a large program, try rehearsing activities such as removing your shoes and going through security, boarding the plane, or deplaning at home. You can also read books, watch videos of different parts of the travel process, and visit airports to watch planes take off and land. For Saturday’s Wings for All event, we created a visual schedule, which was helpful for many attendees.
We all have things that seem to annoy us to no end. Traffic, a never-ending conversation, or hearing someone loudly chewing their food. When it comes to those with Autism Spectrum Disorder, we also have our own set of pet peeves, just like everybody else. However, from my experience, I’ve acquired quite a few through my interactions with (mostly) well-meaning neurotypicals. In hopes to bring about change, I will detail exactly what my pet peeves are. Neurotypicals, please pay attention and think before doing the following:
1) Making Fun of Our Quirks and Eccentricities
It’s never okay to make fun of someone just because he or she is different. It’s unkind and insensitive to point out an autistic individual’s words or behavior out of a warped sense of humor or arrogance. Newsflash: It’s bullying! Yes, we might have “odd” facial expressions or ways of saying things, or some of us might have a narrow set of interests, but we’re just as human as anyone else! Last time I checked, jokes were supposed to make us laugh. Humor should never come at the expense of someone else and certainly not at the expense of someone with autism.
2) Portraying Us on Television Inaccurately
This one really gets on my nerves. People with autism have enough trouble without being misrepresented on popular TV shows. There’s several that regularly show (or have shown at one point) a character with autism for either entertainment or a misguided attempt at education. In my opinion, here’s the worst offender: The Big Bang Theory. One look at Sheldon, the main character, and you can clearly tell he’s supposed to be autistic. His voice is different, he stims, he loves science, he takes things literally—the list goes on. Every time he says or does something, it’s almost always shown as “funny.” Why? Oh, right, I get it, because he’s obviously not “normal” like some of the other people on the show—that’s why they put the laugh track over his stuff! When it comes to showing people with autism, or even the questionable practice of having actors pretending to be autistic, we need enlightenment, not entertainment.
3) Misunderstanding the Term “High-Functioning”
Why do some neurotypicals think that Autism Spectrum Disorder isn’t a problem just because it can be high-functioning in some people? Stage one cancer is still cancer, and high-functioning autism is still autism! No, I’m not in any way comparing autism to cancer, I simply mean that having a lesser version of some condition will nevertheless cause more problems than not having the condition at all. To anyone who believes those who’re considered high-functioning have it “easy” or “the best of both worlds,” let me keep this short and simple: You’re wrong. I still have difficulty to this day in certain social situations and understanding others’ points of view, to say nothing of trying to manage my finances and stay independent. I hope society tries not to make such hurtful assumptions in the future.
4) Not Appreciating Our Need for Alone Time
People on the spectrum, despite what you’ve been told, are not antisocial. Many of us do want friends and enjoy interaction with others. However, there’s a crucial fact about us that many neurotypicals don’t consider: We need alone time, and a lot of it! Those with autism usually need much more time to recharge their batteries, even more so than your run-of-the-mill introvert. The reason for this is it takes far more energy for us when we’re trying to be social, which is complicated by the fact that we tend to have less energy (and go through it a lot more quickly) than others. Throw a part or full-time job into the mix, and this becomes especially true! It can mean that we’d want to spend days or weeks alone. That’s why I sometimes don’t enjoy it when my friends want to hang (or even simply chat). I don’t want them to take it personally, so I’ve made sure to communicate that to them. However, there’s been conflict about it in the past, which doesn’t solve anything. It’s not that I don’t want any friends, I just need to rest and relax! Let me do that, and I promise our friendship will go a long way.
5) Dismissing and Invalidating Our Struggle
There’s been a lot of improvement in helping people with autism: specialized curriculums, greater awareness, increasing levels of technology to tackle learning and communication issues, and much more. However, the fight is far from over because many people still don’t understand our struggle. I’ve heard them say that we’re spoiled, that we’re selfish—and perhaps worst of all, that we “don’t need that much help.”
At the risk of sounding like a broken record and spouting off a bunch of statistics, I’ll just keep my blood pressure to a minimum and link to one of my previous articles here. Please note the title: “The Struggle is (Really) Real.” Please also note the objectively proven, in-no-way-made-up data about suicide and unemployment!
Sadly, when it comes to common misconceptions about autism, I have a lot more to say. That’s why this article will be split into two parts. Anyway, this wraps up part one—stay tuned for part two!
ABOUT THE AUTHOR
KYLE GOSWEILER, WRITER AT MADISON HOUSE AUTISM FOUNDATION
From Arlington, VA, Kyle Gosweiler is a caregiver to special needs children and a dedicated advocate for those like him on the autism spectrum. He writes opinion articles for Madison House Autism Foundation.
Sometimes I think it is a miracle that I met my husband. Not just because he can be absolutely wonderful, loving, and caring in his own way, but because we happened to go to the same event, at the same time, both being newbies, and him on an extremely rare foray into the world of socializing. It’s not that he wants to be antisocial all the time, but being on the autism spectrum, he is frequently burned by it.
Before We Met
On meeting him, I did not get the impression at first that he was on the spectrum or that he was so insular and isolated. Sure, he worked from home and was relatively new to the city, so had no existing work or friendship groups to be with. However, he talked a lot, about many things, was witty and funny, and well dressed. In hindsight, I was falling for all the old cliches and thinking one of the worst things people can say – “Oh, you don’t look autistic.”
Throughout his life, he’d had short relationships which burned out quickly for different reasons and a rotation of friendships that started well and then ended with them ignoring him or moving on. He’d been bullied at school and tormented at home by his sister. This constant changing and having to find new friends and new people led to him becoming increasingly isolated as he found comfort in movies, music, and especially books. He loved ancient history, archaeology, science, psychology, Asian literature (“Not manga!” – husband), and philosophy. Yet whenever he went out, he’d come home feeling overwhelmed, tired, and burned out with the thought of one ex ringing in his ears – “Can’t you try to be more normal?”
True Love Comes from Understanding
Like many people who are not on the spectrum, I did not understand autism at first. The long bouts of isolation or the inability to settle after a night out were difficult. That’s not to mention the different way of being – arms crossing while chatting happily, not making eye contact, or missing social cues. He also seemed to know a lot if you hit certain topics, and I was sure he was using phrases I’d heard in 90’s television shows as part of his everyday lexicon.
Through this I have learned that true love comes from understanding, a deep knowledge of how someone is and why. My husband is always trying to work out his own mechanisms as such – why he does what he does. Is it due to biology, physical or psychological experiences, family, etc.? It can be disconcerting to see him this insular, but I can also see he’s working through things, trying to reach out, and trying to be like other people so he can fit in.
Give Someone a Hug Today
I want to close with perhaps the most romantic thing my husband has said to me. When trying to explain what autism is to me when we were in the early days of our relationship, he said that it felt like always wanting a hug and to feel the comfort a hug should bring but never finding it when he got one. However, when we cuddled on the couch, he felt that contentment. Give someone a hug today or at the very least, call them and talk to them. If your isolated friend or loved one is on the spectrum, do things their way for once, you’d be surprised how much better they feel.
The following video below brings awareness to the issue of social isolation. Please watch, share, and try to make time to reach out to your loved ones today. You never know who might be feeling lonely.
Here's why you should call your Grandparents... - YouTube
According to a study, more than 3.5 million Americans live with an autism spectrum disorder. One concern of adults who are personally living with autism is the ability to convey their specific needs in the event of an accident or emergency.
Emergency medical alert bracelets ensure that symptoms of autism, such as difficulty communicating and repeated actions or ticks, are not misdiagnosed by medical professionals. Wearing a medical ID clearly defines that these symptoms are linked to autism and that they are not caused by the medical emergency especially when time is of the essence. Thus, wearing a medical ID helps avoid unnecessary tests, long hospital stays, and can even save a person’s life.
Four Things to Consider When Choosing the Right Medical ID
1. What to Engrave
The first step is to identify the most important medical information to include in your medical ID. Apart from autism, other conditions such as food allergies or diabetes can be engraved on a medical ID. It’ll also hold your emergency contact’s details whether it be a loved one or an attending physician. For example:
Name: Jasper King
Medical conditions: Autism, Peanut Allergy
ICE: Janet 510-462-1172
2. Wrist Size
Medical IDs can be easily ordered online by providing your wrist size. The right way to do this is by using a measuring tape and adding 1/2 to 1 inch to match how fitted you’d like your medical ID bracelet to be. Medical ID necklaces with a variety of chain sizes are also available.
3. Age and Lifestyle
Nowadays there are large selections of medical IDs to choose from. Start by choosing the type of medical ID that’ll fit your lifestyle or employment. As an example, a person living with autism and is working as an IT professional may prefer a classic stainless medical ID to go with workplace attire. Someone working in common trades like carpentry or plumbing may prefer light weight curb chain medical alert bracelets.
4. Personal Style
Last but not the least, choose a medical ID that you’d be proud to wear. Remember, a medical ID jewelry is something you’ll need to wear consistently for your own safety and peace of mind. Enjoy wearing it by choosing a medical alert that fits your personal style. Look for style categories like classic, modern, urban, rugged, and vintage among many others.
Refer to this handy image when choosing your medical ID and continue below for a special discount.
95% of emergency respondents check for a medical ID. Medical ID jewelry is a simple & effective solution that can bring safety, security, and peace of mind for adults with autism and their families – regardless of which spectrum an autism belongs to. In addition, medical IDs allow wearers to advocate for their own health and safety while raising awareness in their own community.
Get 10% off Autism Medical IDs
American Medical ID has partnered with Madison House Autism Foundation to provide members with a special 10% discount on all our medical IDs. For every purchase, American Medical ID will also give back 10% to MHAF to support the organization. Part of American Medical ID’s advocacy is making medical IDs more available to those who need them most.
Enter code MHAUTISM upon checkout to receive special 10% discount (5% on 10kt 14kt gold) plus a 10% donation to Madison House Autism Foundation. You may also follow this link to receive your special discount.
Ali is a 22-year-old man who was diagnosed with global delayed development due to a complicated pregnancy and delivery. When Ali was close to graduating high school and “aging out” of the school system, his family was stressed about what came next. The reality was, that there were no supports in place for young adults with special needs except for menial jobs. Although Ali was eager to join the workforce and become a producing member of society, his special needs prevented him from doing that. It was simply too hard for him to land a meaningful job in a market that does not cater to people with special needs.
Things began to take a turn for the better when Ali was 19 years old. He asked his mother, Rana, about what profession he would pursue after high school, and with many aspiring artists in the family, Ali’s mom suggested that he try working on an art project she was starting. The rest was history after that. In working on this project, Ali’s mother discovered that her son had a unique artistic talent of selecting colors, designs, and appliqué to apply on clothing, home, and dining accessories.
Ali soon began working with a graphic designer to create and sell appliqué art. His appliqués come in different shapes, colors, and material. Ali sorts them, then when the artistic idea is initiated, he matches the design, color, shape to the item (clothes, porcelain, fabric, glass, furniture etc.) to generate the final product. You can view some of Ali’s designs below.
Ali’s creativity was so stunning and appreciated by friends and family, his family decided to share it with the world. They created an online store using Weebly, a commercial site that hosts similar small businesses. Click here to view Ali and Rana’s website at www.ranaandali.com. Sharing Ali’s work also became a source of encouragement to other parents caring for children with special needs, to help them search for their kid’s hidden talents. Rana says, “We are firm believers that these young men and women have special skills that need to be discovered and cultivated.”
Ali’s products have been shared across their community in Maryland, Virginia, and DC and across the globe. When asked to describe this project’s greatest success, Rana said, “Seeing Ali’s products being shared, displayed in exhibitions, sold and appreciated by lots of people and art lovers, and seeing that with his disabilities he could create these products, is by far the greatest achievement for this venture.”
Rana’s goal is to grow this initiative enough to expand and support more adults with special needs. She says, “Our goal is to make Ali’s dream a society-accepted reality. His store is a source of inspiration, motivation, and self-confidence. The sense of ownership and productivity is rewarding and a dream for any young adult. Through it he can reach out to the community using arts as a way of expression and communication.”
When asked what advice Rana would give other parents who are guiding their children through the “aging out” process, she said, “Few jobs on the market cater to these young adults. Parents should be the ones to get to know their kids and see what they like and identify their strengths and capabilities. We all have a hidden talent, and individuals with special needs are no different, but their gift comes wrapped in challenges and struggles. Parents should be creative, patient, and think outside the box.” Watch the video below to see Ali creating his beautiful appliqué art. It’s a fascinating process!
Ali's Applique Art - YouTube
DIGITAL MEDIA MANAGER
MADISON HOUSE AUTISM FOUNDATION
Madison House is excited to announce that the #Imagine21 film “Jeffrey Morris’ Story” has been accepted into the Sprout Touring Film Festival. Founded in 2003 and produced by New York City-based nonprofit Sprout, the festival’s mission is to inspire audiences, promote inclusion and support transformative filmmaking as an integral part of social change. We are thrilled to be a part of this wonderful program.
The #Imagine21 series highlights the incredible stories of adults living with autism and the unique circumstances they face as they age into adulthood. Through them, viewers are intimately acquainted with just a few of the people behind this diagnosis and come to a fuller understanding of the value they have to add to our lives when we as a community respond to the challenges they face.
“Jeffrey Morris’ Story” centers around a gregarious and theatrical North Carolina man named Jeff. Born with Fragile X, Jeff has encountered many struggles throughout his life. Yet, with the support of his is dedicated parents, Louise and John, Jeff has been able to pursue post-secondary education opportunities and become an active member of his community. Watch the film below and be sure to check out a Sprout Festival in your area!
#Imagine21 • Stories of Adults Living with Autism • Jeffrey Morris - YouTube
Many adults with disabilities choose to live in group homes, yet there is stigma in the disability community surrounding this housing option. What most of us can agree on is that group homes should be held to high standards in terms of promoting staff accountability, eliminating abuse, and providing lives of dignity and safety for residents. Life Services Alternatives (LSA) is known in California as an exceptional group home (Adult Residential Home) provider. As a parent leader who has advocated for and opened a dozen group homes, LSA’s Executive Director Dana Hooper spoke with us about what group homes can offer and things to look for in a service provider. Watch the video below to learn more about Hopper’s work and continue further to read our conversation.
Dana Hooper Talks About Life Services Alternatives - YouTube
Q: What is and who typically lives in a group home?
A: Group homes (aka Adult Residential Facilities) are homes for 4-6 adults with developmental disabilities. In California, these homes are licensed by Department of Social Services and are vendorized by one of 21 Regional Centers. The homes fall into various categories and provide different levels of care and support that reflect the differing needs of the residents, such as how much help is needed for daily living, getting around, medical conditions and to keep them safe and healthy.
Q: What types of support needs, family circumstances, or personalities are best served in a group home setting?
A: Certain types of needs (such as around-the-clock nursing care) are best served in a group home. No one family circumstance or personality is best served.
Q: What are the pros of living in a group home?
A: The opportunity to develop relationships with roommates and to work together to learn to be more independent. Living in a group home can provide opportunities for socialization and an opportunity to work with others to build upon these skills. This can be hard to find when living alone or in a smaller group setting. We have found that when people with differing abilities live together, they complement and learn from each other.
Q: What should be considered about choosing life in a group home instead of one’s own apartment or an adult foster care arrangement?
A: Consider which environment the individual would rather live in and take a close look at the providers and the specific programs offered to see what is most beneficial to the individual. This is where knowing the needs and individual’s preferences and personality is so important. Everyone is different. I’d suggest seeing the program in action and meeting the individuals and staff members before choosing.
Q: Why do group homes sometimes get negative press?
A: First of all, quality can vary in any industry. There is a natural tendency to assume that all providers are bad just because a few received negative press. In California, providers may be “for profit” or “not for profit” organizations. The State sets the rates for residential services, and it’s the same for all providers. Unfortunately, the State has a history of freezing rates and/or not keeping up with the cost of doing business. This puts a tremendous amount of pressure on providers to keep costs down to survive. Providers have to find ways to maintain quality. This may include outside fundraising, better cost control or efficiencies.
Q: What are characteristics to look for when considering a specific group home provider?
A: Visit the homes to see how well maintained they are, as this is a good indication of how well funded and run the organization is. Talk with staff and ask questions to get to know how they run their program and how they operate. (See the questions below that may be useful in determining the quality of the staff and programs and determining the fit for you and your family member.)
Q: What questions should be asked when considering a specific group home provider?
A: Here is a list of questions to consider:
What are their values – can I trust them?
What is the level of quality of their homes/program and staff? Can I observe and verify the quality through references?
Have they demonstrated that they have adequate financial resources and stability?
How involved in the community are residents?
What does community involvement look like?
How do they view family involvement?
What kind of a track record do they have?
Q: Do you have any ideas on improving the quality and/or ensuring accountability of group home providers?
A: Yes, absolutely. The rate structure needs to be overhauled and rates aligned with outcomes/performance. Higher quality programs and/or programs located in higher cost of living areas should have higher rates. The oversight today is oriented toward detecting/correcting deficiencies and doesn’t address quality.
Dana Hooper has served as LSA’s Executive Director since 2007 and is an advocate for creating more Adult Residential Homes. During his tenure, he has successfully opened 8 homes in Santa Clara County. As a past board member of San Andreas Regional Center and a parent of a developmentally disabled son in Supported Living, Dana understands the full spectrum of housing options in the local community.