Category Archives: community

Transitioning Out of School … Geronimo!

(This is the 1st part in a series of blog posts about navigating the mine fields through special education and beyond. We will be examining relevant topics across ages 1 to 25 for special needs children and young adults … things that we learned ourselves through trial and error. Hopefully we may help you replicate the successes and avoid the mistakes.)

Parachuting photo: Flickr, eschipul

Last June at 22-years-old, my son exited the public school system and took the flying leap off the so-called “transition cliff.” Geronimo!! Thank heavens his parachute opened and he has  settled gently down into his new life without school. It was a little unnerving to wake up one day without the school special education services that we had relied on for 19 years. But with some very intense preparation and help from experts, we successfully transitioned him into adult life before that day.

Waiver Programs

Whatever your child’s age, it would be prudent for you to start checking into your state’s waiver programs and perhaps add your son or daughter’s name to the appropriate waiting lists. These are not entitlement programs but they do provide funds for specific services. Your child must meet specific criteria and there is always a waiting list no matter which state you live in. Some states have long wait times for these waivers. The earlier you are able to think ahead and get on these lists, the more likely that your child will be eligible during and his/her post secondary school transition. There are waivers that help pay for in-home care (put your child on this list as early as possible if you need help at home) and different waivers that cover a lot more. For some waivers, e.g., Home & Community-based Services (HCS), you may want to consider the timing before adding your child to the wait list so the waiver availability coincides with your child’s exit from school. For example, if your child will exit school at age 22 and the HCS waiver has a 10 year wait list, then consider adding your child to the list when he/she is 10 or 11.

For more information on waiver programs by state, check out waiverinfo.com.

Begin Transition Planning

When should you start thinking about your child’s life after school? The earlier the better is the pat answer. That can be difficult because some of your child’s talents and interests may not blossom until they are in middle or high school. For example, we had no idea that our son would learn to love basketball until he was about 15 when he was spontaneously included in a family basketball game. Our family is very boisterous and he liked all the cheering and noise. In high school, he grew to almost 6 feet (another surprise) and was a deadeye. His basketball skills were honed through Special Olympics and we turned his love of the game into job, reward, entertainment, social, communication and recreational opportunities.

Some of the ways we interwove basketball into his life were:

  • He began sweeping basketball courts and picking up balls at the school gyms as a volunteer job.
  • We set up a token-based reward system for him and when he completed 5 chores or activities, he earned about 10 minutes for shooting baskets.
  • He is mostly nonverbal but he can say basketball pretty clearly. On his communication device, we created a screen that he can use to comment when shooting baskets. This reshapes his less appropriate yelling/cheering into conversation.
  • We started taking him to watch live basketball games which he enjoyed.
  • Even though he has absolutely no interest in watching television, we have been able to get him to watch parts of basketball games on tv.
  • We invite friends over to shoot baskets as a social activity.

As you can see, basketball became an integral part of his life. Before age 15 or 16, we would have told you that his passion was swimming. Given a choice between basketball and swimming, our son chooses basketball every time. We were really off the mark.

When your child is 14, you will want to start thinking about a long-term vision for your child. The federal Individuals with Disabilities Education Improvement Act (IDEA) requires that transition planning begin by age 16  or younger (click on the IDEA logo for more information).  Some states require planning to begin earlier.
http://idea.ed.gov

Consider requesting a Person-Centered Planning meeting from the school to help direct the process. Include your child if possible. Think about all the things your son/daughter enjoys and try to incorporate those into the plan. If your son or daughter is able, have them lead these meetings, write, or at the very least contribute to this plan. Shoot for the highest level achievement. You can always back off if it is not working. Be creative. An invested, creative, diverse team working for your child is the key to this process.

Click on The ARC logo to find a local chapter and ask for more information on Person-Centered Planning.

The ARC http://www.thearc.org/find-a-chapte

Transition Assessment

Ask the school for a transition assessment or hire an expert to develop one. This is a document that describes each transition domain (area), identifies the goals and lists the next steps for each goal to be realized. It should be a plan for a plan. You and the school can work from the assessment to investigate and develop the transition services your child will need. The transition assessment can be expanded to become your child’s transition plan and will be ever-evolving. 
Our son’s transition plan was written when he was 18 (we should have done this earlier). Even though he has exited school, we continue to update his transition plan. It’s a helpful tool for staff, teachers or professionals who will be involved in your child’s transition process and beyond.

Transition assessments and plans usually address the different domains of your child’s life. Our son’s transition plan has 6 domains: Employment, Adult Living, Social & Leisure, Behavior, Communication, Life-long Learning,. The number of domains may vary and have different nomenclature but the idea is the same.

Employment Domain

Generally, parents focus on the path to meaningful employment with a transition plan. If your child might be continuing with a post-secondary education (e.g., community college classes), he/she needs to be prepared academically. If you think he/she will be attending a trade school, perhaps have the school look for a job for him/her where appropriate skills might be learned. If you think your child should be employed, then get the school focused on employment opportunities through job trials.

You and/or the school do not have to do this alone. Your state should have a vocational agency that helps individuals with disabilities locate employment. Click on the U.S. Department of Education logo to find the organization in your state.  Click on the APSE (Association of People Supporting Employment First) logo for additional information on employment and employment ideas for individuals with disabilities.

http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_id=sv  APSE http://www.apse.org/

Adult-Living Domain

As you can see, there are many very important areas that need to be addressed with a transition plan. Our biggest struggle was with the Adult-Living domain because our son lacks so many life skills required for independent living, is nonverbal and has absolutely no sense of safety. We followed an independent living model developed at the University of Kansas Beach Center for more significantly disabled individuals (click on the logo to learn more).
Beach Center http://www.beachcenter.org/

The consultant who worked with us on our son’s transition plan also gave us several interesting examples beyond the group home style of living too, like apartment living with staff in adjacent apartments. And I know of a family consortium model that is being set up in Ohio. There are many non-traditional ways to address this issue and allow your child to live more independently in the community.

Social & Leisure Domain

From a survey that I helped administer for a non-profit organization, I learned that most parents of kids with special needs worry first about what their child will be doing during the day when they are no longer at school, and second about friends and social activities. Some training may be needed to enable appropriate social interactions. Also small group activities are a great way to encourage socializing. When our son was in school, Special Olympics practices and meets were a good way to develop sports skills and some social / team interaction (click here to find out what sports are available near you). Now we focus more on mixed ability groups that include neurotypical young adults of similar ages.

Racers in the 50 mm race at the Special Olympicsphoto: Flickr, West Point

 

Behavior, Communication & Life-long Learning Domains

In our son’s world, behavior and communication were the big barriers to the rest of the domains. Without appropriate behavior and some type of communication, several other domains could not fully be addressed and accessed. His inappropriate behaviors are directly related to his difficulty to communicate so these were tackled with both Applied Behavior Analysis (ABA) and functional communication. As difficult as this was, we started ignoring all of his aggressive behaviors (hitting, pinching, hair pulling, shirt yanking) and praising him when he made requests appropriately through speaking, his communication device, pointing to an object or pointing to a picture. It was rough for a while and sometimes we had to retreat behind a wall or locked door, but eventually the only way he could get what he wanted was through an acceptable form of communication. We have seen a dramatic decrease in his aggressive behaviors.

At age 22, we started expanding his communication beyond his simple wants or needs into other areas. He seems to be enjoying this. Our kids can continue to progress with a plan that incorporates life-long learning. Do not overlook the importance of continued learning.

Transition Tips

Here are a few tips for parents who need help getting started:

Learn. These days, there are many transition conferences across the nation. Find one near you and attend. These will have lots of different ideas and information for you. The benefit of going to a local conference is that they will provide resources that are directly accessible to you. Conferences in other states led by experts can be great sources of federal information and a way to make connections, but local conferences are the most efficient way to find out a) what resources are near you and b) how to access them.
The National Dissemination Center for Children with Disabilities has detailed transition information on Transition to Adulthood (the name has been changed from the National Information Center for Handicapped Children & Youth but the NICHCY acronym was kept) on their site.

NICHYCY http://nichcy.org/schoolage/transitionadult/starter  Wrightslaw http://www.wrightslaw.com/idea/art/defs.transition.htm  NDRN http://www.napas.org/en/ndrn-member-agencies.htm

Click on the Wrights Law logo for helpful information on Transition Services and parent rights.  There is an agency in each state that helps those with disabilities get the services they need. All state agencies are part of the National Disability Rights Network. Click on their logo for contact information for the agency in your state.

Network. Seek out other parents and professionals who are knowledgeable about transition in your area. Join a reputable organization that focuses on your child’s disability / disabilities. My husband signed me up for a committee with the local Autism Society chapter. It turned out to be a truly enlightening experience.
When you are looking for families to connect with, try and also seek out families who have a child / children that are at least a few years older than your child. This will mean that they have gone through some of the issues that you may be facing already, and you can learn from what did / did not work for them. Alternatively, find a website or blog that you can follow with transition tips if you don’t have time to join an organization.

Be creative. New ideas are a key part of the transition process. Parents sometimes worry so much about their kid’s safety, awkwardness in public, or inappropriate behaviors that they don’t welcome new experiences. Make contingency plans and be sure your child will be safe and has the necessary supports, and then trust the school or caregiver to handle it from there. Discard ideas that do not work out and further explore the ones that do.
Work the transition plan. Set up a transition team for your child.  It can include ARD (Admission, Review and Dismissal) team members, friends, family members, professionals or others. If your child loves music, invite a musician to a meeting. If he/she enjoys art, invite an artist to a meeting. Have the core team meet periodically (maybe every other month) to work the plan. Make assignments and have team members report back. We have found that inviting 1 or 2 new people to each meeting means more ideas and more discussion.

Adapt. Remember that your vision may need to adapt as options are explored. Don’t be afraid to scrap pieces of the plan and start over. The plan will evolve around your child and the better the plan, the more progress your child will make.

In our next post, we’d like to discuss issues related to supported employment.  Questions, comments? Send us a line!

Crowdfunding Autism

“Does he have it or doesn’t he?”
“What? What’s the word for it? How many letters does it have?”
“Six.”
– Six Letter Word (2012)

A powerful, gritty story of a struggling young mom, and a fantastic crossword solver. A trans-american chronicle of families embracing life as it comes. What do these tales have in common? They both spotlight autism, and each was made possible by crowdfunding.

With sites like Kickstarter and Indiegogo, the ability to connect with people of shared interest and with just enough means, was made a little bit easier. From planters, to game consoles, to dollhouses for budding engineers, crowdfunding has emerged in the last few years as a fantastic route to getting support from the vast reaches of the internet.

This week, we step out of the lab to speak with two successful crowdfunding campaigns for autism, take a look at some numbers and ask: what’s the secret behind hitting your goal?

An Unlikely Parent

With a list of films like I’ll do Anything and The Last Boy Scout, Lisanne Sartor had been involved in creating moving stories for many years now and recently she found herself with an opportunity to create something special. Chosen along with eight other women to direct a short film as part of the American Film Institute’s Director’s Workshop for Women, Sartor wanted to draw upon her life experience as a mother of an autistic child.


Six Letter Word’s original Indiegogo pitch

While AFI’s workshop provides some training and equipment, funding was the responsibility of the participants, and after watching a friend raise the means to adopt a child from China, she decided to launch her own campaign for her short film, Six Letter Word.

Before there was crowdfunding, you would have charity auction, she says, putting money into raising money. “Those things are a lot of time and effort and you had to have a huge group of people helping you do it.” Now you can reach directly to the people without all the same overhead. To be successful still requires effort, Sartor insists. “I didn’t expect how much time it would take every day.” From creating blog posts, to promoting on facebook and twitter, she was constantly reaching out. And it worked. Every blog post brought in new donors, and by the time the campaign had finished, she had raised over $15,000; over $3,000 more than the initial target.

In addition to monetary resources, these sites can act as another channel to connect with the community. “I didn’t just have people contacting me with autism in their lives”. Authors, editors, composers all reached out, wanted to participate and help build the final product. Since the campaign started, Sartor has been featured on The Lady Brain Show to talk about crowdfunding, and Indiegogo approached her about becoming an ambassador based on her success.

What tips does Sartor give for those trying to leverage crowdfunding? Make your promotion video short, personal and be specific about what the funding is for. “People want to know who they’re giving money to.” She also recommended paying attention to the suggestions the sites already give. Indiegogo suggests, among other things:

  • Perks should be personal, unique and offer a tangible benefit to your contributors.
  • Start telling people about your campaign before it’s launched. In person, through email, on social media, blogs or your website; just get the word out as soon as possible and keep them engaged.
  • Post an update to your campaign every 1 – 5 days to keep everyone engaged and to increase your funding.

By the numbers

Kickstarter projects involve a fixed goal and set amount of time in which to attract pledges. If the goal isn’t met within the time period, backers do not contribute funds and the project gets nothing. If, however, the project meets or exceeds the target, the monies are contributed, and backers receive “perks” in return. For media projects like films and video games, perks might vary from a digital copy of the film or software program at the low end, up to a paid visit to the studio or workshop at the upper prize level.

There have been over 100,000 projects on Indiegogo and 73,000 on Kickstarter. some succeeded, some fell short and others are in the process of searching for backers. How many reach their targets? In 2011, Kickstarter published a success rate of 46%, but with Indiegogo the same metric doesn’t quite match. In that service’s case, creators have the option to set “flexible funding” goals, meaning any funds contributed will be exchanged, albeit with a higher service fee, regardless of whether the target amount is raised.

As of this post, there have been at least 256 projects on Indiegogo related to autism, totaling over $700,000 in donations out of $5.2 million requested, with a median project goal of $10,000. The median funding rate of 10% is substantially lower than Kickstarter’s 46%, but without the all-or-nothing constraint, creators on Indiegogo may tend to seek a higher target.

So what’s the secret? Jeanne over at AppsBlogger has a great post on Kickstarter projects, what types succeed and what factors may influence failures: Behind Kickstarter Crowdfunding Stats.

“Do whatever you can to get featured on Kickstarter. Projects that are featured have a 89% chance of being successful, compared to 30% without.”

Size of goal, whether you have a video, duration of project; all these may influence your crowd-funded (or unfunded) fate. At the very least, make sure to look at similar projects and learn from their examples. Sometimes your own experience is the best teacher, as our next story illustrates.

Round Two

The first time Richard Everts went to the well of the people, he wanted to seek funding for final stages of his team’s film: United States of Autism. They needed funds for post-production which was how the team pitched it, but that line didn’t resonate. People didn’t have a film background and couldn’t relate, Everts explains. His film chronicles a journey across America, talking to people in the autism community about life with autism.

Before Kickstarter, Everts’ non-profit, the Tommy Foundation had won $50,000 as part of Pepsi’s Refresh competition. To pay for additional filming costs, they looked to crowdfunding, but after 30 days, the campaign had garnered only 11% of the funds requested, and he headed back to the drawing board.

The Refresh project, he says, didn’t require anything from interested people, they just needed to vote. Kickstarter, in comparison, is much more complex: “We had a lot of people who were really turned off by that.” To back a project on Kickstarter, participants must create an account, link to Amazon for payment, and most significantly, actually hand over their hard earned money.

So he tried again, and in March of 2012, US of Autism re-launched on Kickstarter. They changed their marketing tack, including better perks and a simpler message: “’Help us finish the film’, people can get on board with that.”


United States of Autism (2013) trailer

The result? United States of Autism topped their goal of $10,000 in May of last year. Everts is happy about the result including the networking opportunity that resulted from the successful campaign. Asked if he would turn to Kickstarter again as a resource, Everts was unsure. “For smaller projects … you can probably pull something together”, but they’ll use it as a backup plan in the future.

What’s Next?

As for the next steps, United States of Autism is set to premiere in select cities, starting with New York, this spring. Sartor’s Six Letter Word is complete, and she hopes to turn support from a successful festival run into a feature length film. And many other projects like theirs will continue to raise funds toward worthy causes like autism. Perhaps you will join their ranks, and if you do, send us a line! We’d love to hear your story.

Thanks go to Lisanne Sartor (http://www.sixletterword.org/) and Richard Everts (http://usofautism.com/) for speaking with Autism Labs about their journeys through crowdfunding.