Florida's First Choice for Autism Support

Posts tagged ‘advocate’

Preparing for College with Autism

Speaking from personal experience, I know that going off to college as a young adult on the autism spectrum can be an overwhelming prospect, one that many will not be able to overcome. The thought of leaving home for college is scary for every high school graduate; I mean, we’re still kids at that point. But considering the unique challenges that face so many on the autism spectrum, it can be exponentially more difficult. My first attempt at university immediately following high school was, to be completely honest, a train wreck. However, I believe that every failure you make it through brings you one step closer to success, and I learned and grew a lot from that time. Now almost three years later and with much more experience and knowledge under my belt, I have a far better understanding of what it takes to be successful for those with autism looking to make it in college. I would like to share these thoughts with you all, in hopes that it will give you a better idea of how to overcome certain obstacles.

The main issue that I and so many others face is the sudden leap into independent living. No longer will mom and dad be there to bail you out of your problems, or sit you down and force you to do your homework. It’s harsh, but that’s just the way the world works. Preparation BEFORE going to college is absolutely essential. Now, assuming you were diagnosed with a disability before the age of 16, you should have had an Individual Education Program (IEP) set up throughout high school. The IEP is all a part of “transition planning,” which, according to this article, is training or experience, “from hygiene to banking to job training, driver’s education, sex education, college admissions and more,” all things which are never really covered in school, but are immensely important life skills.

But it doesn’t stop there; in fact, the journey is just beginning. Once you get to school, there are plenty of resources available to you, and it’s essential that you utilize them as much as possible. At USF, there’s the Students with Disabilities Services and just about every university has something similar. These people want to help you, but it’s your responsibility to go to them, they will not come to you. If you take away any one thing from this, it’s that you need to become an effective self-advocate. Is there pressure on you to take on more of a workload than you’re comfortable with? Make sure to let the advisor know. You only have to take a few classes at a time, there’s no rush to finish college as soon as possible.

On the Autism Speaks website, there’s a large and comprehensive list of resources for post-secondary education that I suggest you take a look at. Most importantly, remember to relax and pace yourself, stress can ruin your life in college if you let it!

  • G. Sosso
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Water Safety is Critical

water safety tip

There are a number of swimming lessons and water safety education resources throughout the communities we serve through CARD-USF. They may or may not have expertise working with students with autism spectrum disorder. CARD-USF staff provide trainings upon request to various recreation programs, but even with our training, you need to make sure the instructors and programs you choose are right for your family. Please let us know if there are some terrific programs that worked well for your family so we can share the good news with other families. Here is a list of resources for all 14 counties we serve: swim lessons

Disclaimer: As a policy, CARD will not lend its name to the endorsement of any specific program, practice, or model that is offered for service to people with autism and related disabilities. However, the sharing of information and training opportunities are key functions of the CARD program.

Guest Blog: “Interfere with her”

These were the final words of advice from the child psychologist who diagnosed my daughter with ASD over 23 years ago. At the time, I understood neither why this was so important, nor how to do it.
As I read books and articles, connected with community service agencies, therapists, and most importantly with CARD, the picture slowly began to emerge.
Left to her own devices, my daughter would quickly develop rigid habits, obsessive rituals, and limited interests. It became important to offer her alternative opportunities and experiences, although each new experience often led to yet another expectation, habit or ritual. But at least they were expanding, right?
The research literature years ago was more focused on interventions than it is today. These days, most research dollars are aimed at understanding genetic and environmental causal factors for ASD, and thus possibly identifying biomedical treatments for the core symptoms. To date, though more and more physicians are prescribing medications for children and adults with ASD, none successfully address the core symptoms of communication/social skills and restricted and repetitive interests and behaviors. Most medications simply attempt to address non-core symptoms such as anxiety, aggression, depression and OCD.
As for interventions, most researchers are satisfied that methods based in various forms of applied behavior analysis are considered the most effective. Other interventions based in relationship development, cognitive behavior therapy and mindfulness are among those considered emerging, promising, or even sufficiently evidence-based to be recommended by referring professionals.
As a parent, I tried to identify what all the numerous types of interventions had in common, and the one thing I kept thinking of was the psychologist’s words to me as I was on the way out the door: “Interfere with her.” These interventions all, one way or another, attempt to draw individuals with ASD away from habitually limited patterns of thought and behavior, and expand, or generalize, new skills into more socially- and community-based interactions.
So…how do we do that, as parents, when our children can’t be in therapy every waking hour of the day, and most of us cannot afford the maximum recommended amounts of interventions suggested by research?
Some interference occurs naturally, through regular family activities such as worship services, or when children reach an age of eligibility for school services, whether that is at age 3 or 5.
Entering new environments such as school, therapy, or community-based athletic, recreational, or arts classes, can be problematic and stressful. However, if the transition to a new environment is handled according to the child’s need for information through social experience stories or other visual supports, most children with ASD adapt well and come to anticipate the regularity of the new environment. Rules and expectations for each setting may be contextually-specific, but are usually readily accepted by our children, once they successfully comprehend what is being asked of them. The importance of this step cannot be overemphasized.
Other ways of interfering may take place in the family context at home or in the community by deliberately adding activities to a wall calendar or posting flyers of upcoming fairs, football, baseball or hockey games, concerts, or even unique community events such as the recent “Light it Up Tampa”. Each event or activity is a great opportunity to expose children to new environments with new sets of rules, expectations, and perhaps even inspiration.
Just be aware, this may create dozens of new expectations for events that occur weekly, monthly, or annually. In our family, each season is replete with events my daughter anticipates months ahead of time, and we are a very busy family, especially during fair and festival season.
However a family chooses to “interfere”, one thing I have learned is that the gentler that interference can be, the better and more effective. Roughly pulling a child away from a session of lined-up cars or recital of lines from his favorite Disney movies will create resistance without adding a new skill or motivation to divert his attention. Supporting a shift through advance awareness and rewards, which can be faded as the experience itself becomes more reinforcing has worked well for us.
Having said that, the tendency to engage in rigid, limited or ritualized behaviors is still present, but the people who work with my daughter who understand her need to be gently mentored and guided into new areas of experience are still the most successful, and she seems so much happier for it.

Jean

anna clay

ABLE Accounts: A New Financial Tool for Individuals with Disabilities

By: Olivia Macdonald, MPH, CPH

On December 19th, President Obama signed into law the Achieving a Better Life Experience (ABLE) Act. This now allows for people with disabilities to create savings accounts which would not affect their eligibility for Supplemental Security Income (SSI) or Medicaid.
These new ABLE accounts are expected to work similarly to existing 529 college savings plans. The individual with the disability, along with their family and friends, can contribute up to $14,000 a year to the account. While these contributions would be exempt from the gift tax, they would not be exempt from federal income tax. If more than $100,000 is in the account, SSI benefits will be suspended, but Medicaid eligibility will still be retained. Upon the death of the individual with the disability, the state will be able to recover funds from the account for some Medicaid expenses they have incurred for that individual. Only one account is allowed per person and the maximum funds allowed will be subject to each state’s decision. Funds from the account will be allowed to be spent on things such as healthcare, housing, transportation, and education.
To be eligible for an ABLE account, the individual must have a significant disability whose onset occurred before the age of 26. If they are also already receiving SSI and/or SSDI benefits, they will be automatically eligible to create an ABLE account. If they are not receiving SSI and/or SSDI, but the age of onset disability criteria is met, they could still create an account if they also meet SSI’s criteria for significant functional limitations.
The next step in the law’s progress will be for the Treasury Department to publish a set of final rules to guide state policymakers in establishing an ABLE account program for their particular state. These will inform each state’s guidelines regarding “a) the information required to be presented to open an ABLE account; b) the documentation needed to meet the requirements of ABLE account eligibility for a person with a disability; and c) the definition details of “qualified disability expenses” and the documentation that will be needed for tax reporting” (NDI, 2014). However, it is not required for a state to create an ABLE program, and some states may choose to contract with other states’ programs to offer ABLE accounts to its eligible residents.
ABLE accounts are expected to be available before the end of 2015.

You can learn more details about the new legislation, as well as steps you can take to prepare to open an ABLE account, by viewing the websites and video below:
“Congress Passes ABLE Act: Major Victory for Persons with Disabilities and Their Families”
http://realeconomicimpact.org/News.aspx?id=460

“Are Tax-Free ABLE Accounts The Right Financial Solution For People With Disabilities?”
http://www.forbes.com/sites/beltway/2014/12/04/are-tax-free-able-accounts-the-right-financial-solution-for-people-with-disabilities/

“ABLE Account Planning: Six Next Steps for 2015” by the National Disability Institute
https://www.youtube.com/watch?v=44d58G5GunA

FCIC Needs to Hear From You

The Florida Center for Inclusive Communities (FCIC) needs your help! We are seeking information about what Floridians feel are the needs and challenges for people with developmental disabilities (DD) throughout the state.

If you are a person with a DD, a family member of a person with DD, or a professional in the disability field please take our survey!

It should only take 10-15 minutes.

The survey will be available until Tuesday, October 21st.

Survey Link

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