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Rachel Pollack LIVE Chat Transcript

October 19, 2011 Leave a comment

Rachel Pollack, Chief Operating Officer and General Counsel of Job Path, answered questions about employment, in recognition of October as U.S. Department of Labor’s National Disability Employment Awareness month.

Since 1978, Job Path has helped people with developmental disabilities find and excel in mainstream jobs where they work alongside non-disabled colleagues. Job Path graduates work in banks, retail establishments, restaurants and other organizations.

4:02
Hi Everyone, my name is Rachel Pollack, I am the Chief Operating Officer at Job Path, that provides among other things, employment services for people with autism spectrum disabilities. I have been working in the field for over 15 years, am a lawyer, and have a 22-year-old son with autism.
4:03
Comment From Lisarae

My daughter is 19 and will be losing her SSI on Nov. 10th. She has Apergers and will somehow have to make up that money in the job force. Is their hope? Can she do this? She is very high funtioning but just does not understand social ques very well.

4:05
Hi Lisarae – I don’t know why your daughter is losing SSI at 19 so you should consult with whatever legal services are available to see if there is anything you can do about that. YES there is hope you can find a job for your daughter- just be sure you are looking for a job that matches her strengths and interests. We find that when we work with people and match them to their strengths and interests we have very good success and up to 90% retention rate. Each state has state vocational services and providers that can work with you to help you find a job. I understand that the Autism Speaks Family Services page has a link to vocational rehabilitation services. The important thing it to be a consumer and interview those agencies and try to find one that matches your daughter. http://www.autismspeaks.org/family-services/resource-library/adults-autism

4:08
It might be interesting for people to see what we have found works with people with ASD in looking for employment. We are looking for a customized employment approach that relies on a discovery period where employment specialists spend time in the home and community of people with disabilities. Learn about their interests, strengths, and needs then network with employers that has tasks employees can do in that environment.
4:08
Comment From Monique

Have you attempted to get your daugther an extension on her SSI?

4:09
Comment From Guest

We have a 17 yrs old son. He is very easily angered. Do you have any suggestions?

4:12
Hi Guest – If someone gets easily angered, the important thing is to think about what his trigger points are and to be looking for a job that doesn’t create those triggers. To have a job coach who understands what those trigger points are and who will work with him on those trigger points. We have also found that if that person is on the job and they don’t have a job coach there all the time, they can contact their job coach by cell phone when they feel angry. We have arranged with employers to have accommodations with individuals to remove themselves from the job situation when they are feeling under stress or have brief timeouts during the work day. The important thing is to find an environment that can help accommodate those individuals best.
4:12
Comment From Lisarae

@ Guest…A sensory room helped my daughter with anger….and swinging! We built a giante swing that gets her a good 12 feet in the air and she pumps long and hard! LOL

4:13
Comment From Lisarae

How do I retain these services you speak of?

4:16
As I mentioned, most state agencies have provider agencies that provide support and trainer. The important thing to do is perform research to see which agency provides as much individual attention as possible. There are some agencies around the country that are provider customized employment services, a starting place to find that would be to go to the website Marc Gold and Associates which is where we learned this lesson fromhttp://www.marcgold.com
4:17
Comment From Guest

My brother is 40 with aspergers and is currently struggling to find work. Are there job training opportunities available, if so, where do I go to find them. His primary issue is social.

4:18
Currently, I don’t know of any specific job training programs geared to this group of people. The important thing is to encourage your brother to get training in an area that he likes, that he feels comfortable with, and that is going to play on his strengths.
4:19
There are, for younger people around the country, a range of college support programs, some are publicly funded, but many are privately funded. There are some specialized vocational internship programs – most of which are very extensive.
4:23
I always encourage parents, who are looking for an agency to work with them to do extensive interviewing. Often when you go into a state referring agency, they tell you who they think you should work with. You, as an advocate for your family member, should feel comfortable asking questions about the agency and also asking them for other possibilities. You will want to know about supportive employment programs as well as training programs. A training program will provide training in a particular set of skills. A supportive employment program will start with the abilities an employee has to help them find a job and then provide job coaching. You’ll want to choose whichever type of program you think is best for the family member you are trying to help. Don’t be afraid to call up the agency and ask if you can come in and talk with them. Any agency that is going to work well with an individual will be willing to do that. I am always ready to do that and I am very busy!
4:24
Comment From Jessica

I am currently working on my Bachelors Degree in Psychology, through the University of Phoenix. My goal is to work with special needs children, but I would like to keep my options open as to how exactly (teaching, counseling, therapy, etc). I was wondering, to achieve this goal, should I get my Masters Degree in Special Education, or in the Science of Psychology? Thank You for your time.

4:26
Hi Jessica – I think that a Master’s Degree in Special Education is a wonderful degree that you can use in any work that you are going to do with children or adults. Our director of employment services has a Master’s in Special Education that she has been using to provide individual guidance to adults and assistance for vocational rehabilitation. My understanding is that most special education programs have a range of tracks so that you can customize your degree to the kinds of work you think you may be interested in.
4:27
Comment From Lisarae

My daughter has pedantic speach….will a potential employer understand that in the interview process?

4:27
Comment From Lisarae

Does she need paperwork to enter an agency like that or just a diagnosis?

4:27
Comment From Lisarae

My daughter would do well working alone, like stocking shelves at night in a grocery or retail store, I think. Lets just hope those jobs are out there.

4:32
Every state agency is going to require different amounts of paperwork that the chances are the agency will want some type of documentation of a disability, but that will depend on the state agency. Many state agencies will send, if you don’t have the documentation you need, your daughter or son to a psychologist that they will pay for. In terms of the pedantic speech in the interview process, we at Job Path, try to downplay the interview process for the people we work with. A good employment agency will be introducing the employer to your strengths before her interview and will persuade the employer that the interview process is a more a chance to get to know your daughter than a test of her speaking abilities.
To your last question about jobs being available, one of the strengths of customized employment, we aren’t looking at open jobs, rather unmet needs by employers. The idea is to find tasks that aren’t being done by current staff at the busiest hours of the day, or at time of day when other people aren’t available, to to help staff who are overloaded, or to take other tasks other staff are doing that your daughter can do better. You are not looking for job posting as must as you are looking for specific needs of employers that they have not put in a job posting.
4:32
Comment From Michele Vics

I believe I am on the autism spectrum but I haven’t received an official diagnosis. How do I get around that when it comes to job seeking?

4:34
Hi Michele – If you are going to want an accommodation on a job, you are going to want to get an official diagnosis. If you want a referral to a psychologist, most state agencies will send you for an evaluation. In terms of job seeking, if you are having trouble with the interview process, it is very helpful to have an agency involve to help you network.
4:35
Comment From elizabeth

My son is nineteen and was diagnosed with Autism when he was four. We are fortunate to live in Texas where there is help for individuals throughout their school years to recieve help. He is currently going to a school that provide job training until he turns 22. He is not severe and can be quite pleasent to work with at times. During his high school years I worked on my Associates Degree in Criminal Justice and finished my Bachelors Degree in Social Management, I would like to work with children or with families with children of special needs, but am not sure where to begin. I have applyed at a large school district but have not had success getting through with them. What would you suggest? I am open to returning to school again…Sincerely, Elizabeth

4:37
I think it is terrific that you’d like to work in this field and your experience with your son will be invaluable. There are lots of opportunities for working with families of children or adults with special needs in the adult service system. The adult service system needs really, really good people. if you are not having success with your school district, I would suggest that you look for opportunities in the adult system, in your state.
4:37
Comment From Monique

Hi Jessica. I believe an the Masters in Special Eduacation will offer you more options. As long as the degree is a science degree you will be able to teach. So if the Masters in Special Education is a science degree you will be able to teach and work in your career of interest. So to me two is better than one. I just obtained my Masters of Science in Psychology from the University of Phoenix this pass June. Good Luck. Also, make sure you ask your academic counselor which offers you more options so you want be wasting your time.

4:37
Comment From Colleen

My son is 15 years old. Do you have any suggestions for how I can start working with him so he is better prepared for a job?

4:41
Colleen – 15 years-old is the ideal time to start preparing your son for a job. The most important thing is for him to have the expectation that he is going to work. Too often we work with young people who don’t have that assumption. Second, look for all types of volunteer activities in his community where he can gain self-esteem, connect with a range of people and obtain discipline and a work ethic. You might want to refer to the Autism Speaks Family Services Transition Tool Kit which will give you a range of idea http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kitThe most important thing in looking for internships or volunteer opportunity is looking for an environment where he will thrive so he will have success and feel motivated.My son was lucky to have a high school program that provided work experiences throughout his high school years and it was invaluable. Even if his high school doesn’t have that, you can look for that for after school and weekend activities.
4:41
Comment From Nancy

When my son gets a job, how can I make sure that the people he works with know how to work with him so he can succeed? I’m a nervous wreck!

4:44
Nancy, I think it is important if your son feels comfortable, to have him for and an advocate, discuss in advance with the employer how his disability may affect him on the job and what he needs to succeed. When we place someone with ASD on a job, we meet with the employer and staff before with the individuals permission and describe the ways in which the disability may appear and affect the person. Most employers that we work with this information, embrace it, particularly if they know they have a motivated employee who has skills and who will work hard
4:44
Comment From Liz

Our 17 yr old son at about that age took a cooking class at the FFA in our area. He is interested in being a dietician to teach people how to eat right. Also the YMCA has all kinds of programs in all kind of interests. Good luck!

4:45
By FFA are you referring to Future Farmers of America?
4:46
Comment From gail

do people with autism who work usually like to let everyone they work with know about it

4:49
Everybody has a different feeling about that. I would say that most people fall between not wanting anyone and wanting everyone to know. We have worked with some people who don’t want to disclose, but the young people that work with us are comfortable with their diagnosis and can explain it to the people that need to know.I am always touched by how accepting employees and colleagues are when given information to help them understand. A colleagues might be offended when someone interrupts them if they don’t’ know the person has a disability, but will be understanding they know what was behind that interruption. We are working with one young man with Asperger’s who is working full time a t a law firm. He has chosen to let all of his coworkers know about his disability. He gets very anxious at times and the firm allows him to leave the office and walk around when he feels this anxiety. They appreciate that his anxiety is often triggered by the fact there won’t be enough work for him to do. The firm is able to balance the amazing abilities and motivation he brings against the occasional anxiety.
4:50
Comment From Liz

Yes I do mean Future Farmers Of America. He brought home some yummy goodies from the week long summer class.

4:52
I thought it might be helpful to find some of the jobs that some of the people with ASD have found with our agency. We have placed individuals in data entry and clerical jobs, There are individuals doing research jobs. One man is working on the Geek Squad at Best Buy. We have many young people working on stock and retail jobs. We have two individuals working in libraries as page staff. Those are some examples!
4:52
Comment From sarah

i’ve heard about the idea of job coaches in the workplace. who pays for those and what do they do?

4:54
Each state receives a certain about of money from the government which they can supplement with state funding. In New York, job coaches are provided with funding from our state agency. Individuals don’t have to pay for it themselves and employers don’t have to pay for it either. You will have to look into what the funding is for your particular state.
4:55
Job coaches will help people learn a specific task, will help people adjust to a work place, will help gain natural support from the employer and then phase out over time. I think good job coaching is one of the most important things insuring success.
4:55
Comment From elizabeth

Gail, My son is autistic, but I don’t think it even dawns on him to tell anyone he is autistic. Most of the time he will not make eye contact with others, but he is getting better. His comprehension is not his strongest point, and we tend to go in circles alot!

4:56
Even if someone can’t tell an employer that their employer has autism, there may be an advocate that can do that. In those cases, the family can work with a jobs coach staff to inform the employer they have autism
4:59
In this particular economy it is understandable for people to feel discourage in finding employment for someone they care about with a disability. The good news is that we are just as successful in this economy as we have been in booming opportunities to find job placements. The important thing is paying attention to who the individual is and thinking creatively about where they can be an asset. It is very exciting work that we do and employment is making big differences in peoples’ lives.
4:59
For more information about Job Path Employment Programs, you can go to www.jobpathnyc.org and place let us know if you have any questions or if we can help you!

LIVE Chat with Rachel Pollack of Job Path

October 14, 2011 4 comments

Please join us on Tuesday, October 18  at 4 p.m. (EST) for a live chat with Rachel Pollack, Chief Operating Officer and General Counsel of  Job Path  as she answers questions about employment in recognition of October as U.S. Department of Labor’s National Disability Employment Awareness month.

Since 1978, Job Path has helped people with developmental disabilities find and excel in mainstream jobs where they work alongside non-disabled colleagues. Job Path graduates work in banks, retail establishments, restaurants and other organizations including: Barnes & Noble, Bed Bath & Beyond, Modell’s Sporting Goods, Office Depot, ShopRite, Stanley M. Isaacs Neighborhood Center, T.J.Maxx, Trader Joe’s, Walgreens and Willner Chemists.  Job Path has also worked with law firms such as Paul Weiss, Rifkind,Wharton & Garrison; Cleary Gottlieb; Skadden, Arps, Slate, Meagher & Flom & Affiliates, LLP; and Cahill Gordon & White. Our employment programs are designed to help anyone who wants to work, no matter the amount of support he or she might need.

Asperger Syndrome Training & Employment Partnership

October 12, 2011 8 comments

This post is by Marcia Scheiner, the President and Founder of Asperger Syndrome Training & Employment Partnership.

With the current estimate that 80% of individuals diagnosed with an autism spectrum disorder (ASD) are under the age of 18, the next ten years will see a wave of adults on the spectrum entering the workforce.  Today’s reality is, however, that most of these adults will never achieve full employment.  Of those that do find jobs, many will be underemployed.  The data is not encouraging.  In a 2008 study of 200 families with transition age and adult children with an ASD, conducted by the University of Miami/Nova Southeastern University Center for Autism and Related Disabilities, 74% of the respondents were unemployed and 74% of those employed worked less than 20 hours a week.  These facts must serve as a call to arms for advocates in the autism community.  As the population of individuals with autism matures, so must the movement that has pushed so successfully to develop programs and resources for children on the spectrum.  While the focus on adult issues – employment, housing, financial planning – is growing, we are still running to catch up with the needs of our adults with autism.

In 2010 I founded the Asperger Syndrome Training & Employment Partnership (ASTEP) with the mission of creating and supporting programs that result in long term (and appropriately challenging) employment for adults with Asperger Syndrome and high functioning autism.  Our focus is on educating large national employers about the benefits of employing individuals on the autism spectrum and the accommodations they made need.  Corporate America is certainly aware of autism, with the majority of companies showing their support through sponsorship of autism awareness events and donations to autism related non-profits.  Less common, however, are strategic initiatives to include individuals with autism in corporate diversity hiring practices.

So why should a company take that next step from autism donor to employer of individuals on the spectrum?  The answers are surprisingly easy.  The economic dynamics of the autism marketplace and workforce should be important to companies.  Individuals with autism and their immediate family members comprise a significant market share in the U.S.  ASTEP conservatively estimates that 10.5 million people, or 3.4% of the U.S. population, are touched by autism.   Companies known for employing individuals with autism (e.g. Walgreen’s) draw dedicated customers from this group, because they reinforce both the economic and societal value of employing individuals with autism.  Additionally, studies such as the Ken’s Kids program implemented by Home Depot have shown that people with autism are loyal and productive employees. Hiring individuals with autism is a great way to alleviate corporations’ struggle with the high costs of turnover and lack of productivity they currently encounter.

So with the benefits being obvious, why aren’t more companies hiring individuals with autism.  The reason is twofold – lack of education and access.  For those companies that want to hire individuals with autism, they cannot make this transition alone.  The support of vocational specialists and autism organizations are critical in educating employers not only about the benefits of hiring individuals with autism, but the challenges they face and the accommodations they will need for a successful work experience.  For those companies that have not thought about individuals with autism as a potential employee source, advocacy by parents of children with autism within their workplace will be a key factor in changing that view.  It is the responsibility of all of these groups to educate employers on all of the benefits of employing individuals with autism and support them through the recruiting and integration process.

Family Services Offices Hours – 8/10/11

August 10, 2011 Leave a comment

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:00 p.m. EDT

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

12:54
Welcome to Office Hours offered by the Family Services Department at Autism Speaks. Today’s Office Hours is staffed by Marianne Sullivan, RN, MN, Assistant Director of National Outreach and resources.
12:54
The transition from summer back to school can be tough for everyone, especially for parents of kids with autism? Do you have questions about how to smooth the transition back to school? What can you do to prepare over the next few weeks?
12:58
Comment From Marilyn nunez

What is considered an appropriate education plan for a 6 year old boy diagnosed with pdd nos and adhd combined type? He did veru well in kindergarten almost all E’s on his report card terranova scores

12:59
Hi Marilyn – IDEA provides a free public appropriate education program for children with special needs. Each child is entitled to a program that is tailored to their special needs and a placement that allows them to make reasonable progress with no cost to the family
1:00
A plan for your 6 year-old will depend on what his needs are
1:01
That is wonderful that he received all E’s on his report card! We are glad he is doing well, just keep understanding what his needs are so he can keep making progress
1:01
Comment From Angela Grullon

My son was just diagnosed with autism, he will be attending school for the first time in september. How can i make his transitioning easier since he will be going 5 days a week from 8 to 2. He just turned 3 years old.

1:01
Hi Angela
1:02
This can be a very difficult time of adjustment for your son. It is great that you are trying to make the transition easier for your son. There are a few things you can do to prepare
1:03

The School Community Tool Kit provides information and resources for general education and administrative school staff to support a positive school experience for children with autism.
1:04
Here are some tips for younger students
1:05
There is a wonderful Paula Kluth article that has great suggestions for parents getting ready for school
1:05
Comment From Angela

My daughter is an 8 year old ppd nos with ADD – high functioning autism. She is in a regular 3rd grade class. We had quite a few issues with behavior and working with others last school year. The doctor keeps bringing up the topic of meds, but right now im against that. Do you know of any resources in memphis, tn? I work so hard to find her things she can fit in. Any suggestions on what I can keep doing with the school to make sure my child receives a quality education?

1:06
Hi Angela, how are you?
1:06
If your child was just diagnosed with autism please check out our 100 Day Kit
1:06
Oops sorry! We got ahead of ourselves
1:07
Here is our Resource Guide for Tennesseehttp://www.autismspeaks.org/community/fsdb/state.php?sid=21
1:08
It is very important to work with the IEP Team if it is necessary to understand your child’s behaviors to request a behavioral assessment
1:08
Hi Angela Grullon – here is our 100 Day Kit
1:09
The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
1:10
Comment From Katie

My 14 year-old sister with Aspergers and ADHD will be starting public high school next week. She has not been in school since December (homeschooled) or public school in 2 years (private, homebound, homeschool). How can we help her make a sucessful transition to a very different environment?

1:10
Hi Katie! It is terrific that you are thinking ahead – preparing for a successful transition will make all the difference
1:11
There are a lot of great articles that can act as a resource for you
1:11
Comment From Angela Grullon

Another question. He has this repetitive behavior where he runs back and forth throughout the day, just running.

1:12
Hi Again! We suggest that you meet with your IEP team and request a behavioral assessment so that the team will have a better understanding of the behaviors and how to intervene. It is all in the consistency of implementing the behavior plan!
1:13
Hi Katie – you can also look to our Transition Tool Kit
1:13
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
1:14
You can download this kit as well for FREE!
1:14
Comment From Gabriel

Hello

1:14
Comment From Gabriel

I have a 25 years old brother who is nothing productive.

1:14
Hi Gabriel
1:14
You may also want to check out the Transition Tool Kit
1:15
We are working with on Adult Services because there is such a need. Please also visit Advancing Futures for Adults with Autism (AFAA)
1:16
We are working to bring more focus on this topic as more children with autism are becoming adults. We are looking for a program that focuses on life skills and independent living would be a plus
1:17
Also, check with the Department of Rehabilitation in your community. They should have programs for adults with autism
1:18
Comment From Dena

How can i help my 7 year old son, with his emotions. i know he is going to cry those first few days back to school. He will be in mainstream 1st grade. Even though his has the Autism diagnosis, they say he no longer needs to be in the ASD classroom, nor need a para pro. I’m a little nervous about this.

1:18
Hi Dena
1:18
Even though your son is not in a special needs classroom he has a right to special needs services.
1:19
Under IDEA parents are a vital part of the IEP process and your input should be taken very seriously, even though your child is not in an autism specific classroom. You have the right to request your child has certain services provided
1:20
I suggest you read IDEA and understand your rights and the process that is involved in working with your school district
1:20
You should also visit our page, ‘Your Child’s Rights’ to help with this matter. http://www.autismspeaks.org/what-autism/your-childs-rights
1:20
Comment From Gabriel

The Department of Rehabilation said he is low-level skill

1:21
Gabriel don’t give up hope
1:21
Continue to search your community for the rights that your brother is entitled to. You are doing the right thing and I know your brother will appreciate all of the support
1:22
Having a family member with autism is a lifelong pursuit of finding the best possible fit. Hang in there – you are doing a great job!
1:23
Comment From Guest

how can i make the transition to kinder for my son easy? he use to have an assistant and now he won’t. plus he was not accepted for summer school, so i think it is going to be hard on him to go to school full day.

1:24
If you check our our Community Connections you will be able to find some great articles from professionals on how to make this transition easier. http://www.autismspeaks.org/family-services/community-connections/back-school-its-transition-time
1:24
A suggestion that has worked well for parents, is to meet with the teacher prior to the start of school, to introduce your child. Put together some documents that share your child’s strengths and some successes they have had in the classroom
1:25
It is also helpful to offer some books on autism. Your child’s teacher may not know the latest autism teaching techniques and they may find it helpful
1:26
Paula Kluth’s book, “You’re Going to Love This Kid!: Teaching Children with Autism in the Inclusive Classroom” is a great resource
1:28
Stay positive – back to school can be tough for everyone. But is a great time to be hopeful and optimistic about the year to come!
1:28
Comment From bobbylee

when my son comes home with home work what might take another kid 30mins is taking my son 2 hrs… how can i address this with his teachers with out looking like i want them to take “pity on him”?

1:28
Hi Bobbylee
1:29
The best thing you can do is open lines of communication with your son’s teacher
1:29
Start with a brief meeting discussing the issue of homework. See if there are small adjustments that can be made. Hopefully the teacher will be a good listener and will work with you on addressing the fact that homework is taking longer than it should
1:30
Once the teacher realizes that you are here to help and want to address these issues, many of these problems become easier to solve
1:31
Comment From kendra

I am having a problem with my daughter the teachers talked me into having her go to a different school than the one i had chosen saying it would be a better fit for her. now they are telling me because they have no room they are going to have to send her to this other school (the school i did niot want her to go to at all) because of the comments madre from other people in my asd parent group please help

1:31
Hi Kendra
1:31
As a parent – you are the person that knows your child the best.
1:32
You have every right to bring these issues to the IEP team
1:32
You are a vital part of the IEP process and you cannot be brushed off.
1:33
If you are not happy with the decisions that have been made you may have to consult with an advocate or an attorney. In our Resource Guide we have a directory of advocates and attorneys in your area
1:34
You can also refer to our Special Education and Advocacy Community Connections
1:35
Comment From Dixie

Hi there, is the school tool kit specific to the States, I am writing from Canada and am hoping for something like this for my daughters school

1:35
Hi Dixie – we have an Autism Speaks Canada
1:35
You can contact them here -http://www.autismspeaks.ca/contact-us
1:37
Here is a link to their Family Services Database -http://www.autismspeaks.ca/family-services-database/reset
1:37
Comment From vanessa

is there something that i can do to help my son understand that not all the toys he sees he can have? he is autistic troughs tam trams everywhere.

1:38
Hi Vanessa – you have to figure out what the triggers are for the tantrums
1:38
I suggest your start by using social stories to prepare your child for a visit on a shopping trip
1:38
It is all in the preparation. You can get photos of the store and items that he can have and can’t have so he will better know what to expect
1:40
‘The New Social Story Book’ by Carol Gray would be a great resource for you to use
1:42
Comment From Joyce

We are at the point with are Grandson who is non-verbal, looking into the ipad to communicate with each other. Any recommendations on where and how to get one free or cheap?

1:42
Hi Joyce
1:43
There are sites that do exist that give away these iPads, but as you can imagine, they are in very high demand. iPads are a proven resource as a communication tool for people with autism. You can check here http://itaalk.org/
1:44
Put your name on every list and don’t lose hope. We also produced a ‘Technology and Autism’ that you may find helpful
1:44
Comment From eleanor

i have a 7 yr daughter non verbal and she has had a paro pro for 4 yrs and now they want to change her and give her a aid that knows nothing about autisum very nervice

1:45
Hi Eleanor – we would recommend offering books and resources about autism. Inform the new aid about your child’s unique strengths.
1:46
You have to communicate with your aid and keep them updated and over time you should see progress
1:46
Here are some links from our School Community Toolkit that will be helpful
1:47
With training and support, this aid may turn out to be a great fit with your child. Stay positive!
1:48
Comment From Dixie

My daughter is in senior kindergarten, she is neither high or low functioning, she is just in the middle. She has lost her educational assistant because of this. I am not allowed to send professionals in to consult with the classroom helper for confidentiality reasons. Everything is a hurdle. She is not recogized by her school board as having autism, even though she has a diagnosis. She has no IEP. She is slipping through the cracks and I feel I cannot properly advocate for her. Any suggestions, or more important, what exactly are her rights?

1:48
Hi Dixie – we recommend meeting with an advocate or attorney.
1:49
You can search the Resource Guide by your state to find a legal representative or advocate
1:50
Comment From Marilyn nunez

Any resources out there for advocating on school issues?

1:50
Hi Marilyn, you can just check the links above. Thanks so much for joining!
1:53
When asked, “How can parents work with their teachers?’ One of the best responses I have heard was from Paula Kluth
1:53
She suggests creating a short portfolio, pamphlet, or even a video for the teach. You want to give the teachers some idea on how to work with the new student.
1:54
Again, the idea is to give teachers a well-rounded view of your child.
1:54
You can find more suggestions from Paula atwww.paulakluth.com
1:55
Comment From Michelle

Is it possible to overload our child with services?

1:55
Hi Michelle – the important thing is that you know your child best. You must understand what he or she’s needs are.
1:56
Some kids need less, some need more, but as a parents advocate it is your responsibility to keep what is best for the child in mind.
1:56
Your child is lucky to have you as a parent who can monitor their response to services
1:57
As a parent you have an opportunity to play a vital row in your child’s life.
1:57
We would like to invite you all to subscribe to our ‘Community Connections’ newsletter
1:58
This month we will be focusing on ‘Back to School’
1:58
Community Connections, published monthly by the Autism Speaks Family Services team, aims to increase opportunities and awareness for people with autism and their families in their local communities.Each month’s newsletter explores a relevant topic with practical tips on dealing with everyday situations, links to local resources, and stories from experts and families who share their successful experiences.
1:59
Thank you all so much for coming to Office Hours. Please join us again next Wednesday. Keep us posted on your progress and remember to stay positive as you embark on the new school year!

Autism Speaks Family Services Office Hours 8/3/11

August 4, 2011 5 comments

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:30 p.m. EDT

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

12:50
Welcome to Office Hours offered by the Family Services Department at Autism Speaks. 
Today’s office Hours is staffed by Marianne Sullivan, RN, MN, Assistant Director of National Outreach and resources.Hello and Welcome to our new resource Family Services Office Hours
Today, I would be happy to assist you to find autism related information and connect you with Autism Speaks resources found in the Family Services section of our webpage.
12:52
Comment From Dr Lance

Hi – Do you have any resources, esp online resources for parents of Autistic kids who want to home school their child, esp middle school kids

12:53
Hi Dr. Lance! Check our the Resource – you can search by state and zip code in over 50 categories
12:54
Here are some tips on how to use the Guide:
12:54
Click on your state. A list of categories will appear. Choose a category of interest and search results will appear.Results display in alphabetical order. You can refine your search by entering the zip code and radius (miles) of a specific area. This result will include surrounding areas and states.For a mapped result of resources, click on map, in the distance column. Each resource is represented as a map marker, which when clicked displays the address of the resource.***To submit a service to the Autism Speaks Resource Guide, or update an existing entry, click here.
12:55
Comment From Dr Lance

thanks – I tried that

12:55
Were you not able to find what you were looking for?
12:57
Comment From DJ

As the school year nears and I take more notice of how my 8 year old with Autism has regressed a bit and his behavior has altered some, I’m struggling with the delicate balance of what is CODDLING and what is UNDERSTANDING when it comes to his behavior, reactions and his meltdowns. Any tips?

12:57
Hi DJ
12:57
We actually have a Community Connections on the transition back to school here: http://www.autismspeaks.org/family-services/community-connections/back-school-its-transition-time
12:58
You may find this helpful. Our next eNewsletter will be published on August 18th and we will be updating all of this information
1:00
Comment From DJ

Thanks, I’ll check that out! He’s a very sweet and understanding boy, and I think I struggle with his returning to school more than he does, but we had a horrible experience with his 1st grade teacher and it’s made me so gunshy of new teachers and even new students, as she allowed them to make fun of him with no consequence.

1:00
Comment From CIndy Goffus

Hi, My son is 19 autistic and mr, he lives in avella pa, washington co., his exit iep from public school is on aug 30 2011, he doesn’t want to go till 21, he wants to work at gainful employment–he was working at job lifes work while in school–that stopped at end of school yr 2011, he had his meeting monday with Supports cord-for ISP info……can you tell me how to get funding for paid transportation for him to get back and forth to work…..and how to get job search help and job coah to get him acclimated to his work schedule and routine-for him…he wants to work in a local fish market-Wholey’s-in pgh pa. thanks so much….

1:00
Hi Cindy – Autism Speaks has developed a Transition Tool Kit. I recommend that you go online and order a FREE copy of it
1:01
I think you will find this very helpful
1:02
Comment From Guest

I am working on potty training my daughter who is mildly autistic. Do you have any suggestions or tips

1:03
Hi Guest – we have put together a Resource Library and there are new books that are excellent with the topic of potty training
1:04
Comment From BreeAnn Davis

I have a son who is non verbal most of the time, but we keep getting denied by our local state grants to buy him some communication devices. Any ideas on other places we can look? We cannot afford to buy him one on our own.

1:05
Hi BreeAnn – the communication device may be required through the IEP process. Going through your school district is a good place to start
1:06
If it is required for him as a way to access his education, then the school should be responsible
1:06
Check out this Community Connections on how advocacy can make all the difference! http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference
1:08
Comment From melissa

can i ask for a para pro for my son in his iep and get one even if the school states theres “no funding”

1:08
Read through this section of ‘Your Child’s Rights’http://www.autismspeaks.org/what-autism/your-childs-rights
1:08
This will help guide you further!
1:09
Comment From Guest

Where can a college bound child on the spectrum get grant / financial assistance for college in Idaho?

1:10
HI Guest – here is the page for your statehttp://www.autismspeaks.org/community/fsdb/state.php?sid=16
1:11
Think College is also a great option to look athttp://www.thinkcollege.net/index.php
1:12
Comment From Ginny

Hi, My son is 5 and was just diagnosed PDD NOS. Where can I have information mailed to me on this autism spectrum disorder?

1:13
Ginny you have come to the right place!
1:13
The 100 Day Kit was created specifically for newly diagnosed families to make the best possible use of the 100 days following your son’s diagnosis
1:14
You can also call the Autism Response Team at at 888-AUTISM 2 (288-4762)
1:14
Comment From Joseph Rose

California has IHSS, a program that essentially pays a parent to stay home to take care of a child with Autism. Is there an equivalent in Pennsylvania? I am home with my son all day, and I am struggling.

1:16
Hey Joseph – have you checked our our Resource Guide for Pennsylvania?
1:16
You may find that our Home & Community-Based Waivers section will be helpful
http://www.autismspeaks.org/community/fsdb/category.php?sid=45&cid=78
1:17
Comment From Joseph Rose

just got it open

1:17
Comment From laura

I have a 2 year old little boy who has shown sighns of autisum since he was born we are fighting with his physitianas well as his neuralogist about having him refered for testing. is there a way to have him tested with out their referal.

1:18
ABSOLUTELY! You do not need an early referral to early intervention services
1:18
What state are you in?
1:19
Search this map and it is right at the top of the page – ‘Early Intervention Services’
1:19
Comment From laura

we live in arkansas

1:19
This page should be especially helpful -http://www.autismspeaks.org/community/fsdb/category.php?sid=5&cid=83
1:20
Comment From Amy

Is there assistance for adults with autism who have reached 18 years of age and are being denied SSI benefits?

1:20
Hi Amy -there is assistance for adults with autism and you will be able to get guidance with the Transition Tool Kit
1:21
Remember you 
1:21
Guest – we have more college information for you!
1:25
Comment From Joseph Rose

I’ve heard about families getting an “Autism Advocate” to help with various issues, getting services, etc. I haven’t had much luck in finding out exactly what that is and how to get one.

1:25
You may be able to find an ‘Autism Advocate’ here.http://www.autismspeaks.org/community/fsdb/category.php?sid=45&cid=68
1:26
Comment From Jaz

Are there resources in Florida in order to seek an adult diagnosis?

1:27
Hi Jaz – you should look into getting a diagnosis from a psychiatrist or psychologist who has the experience in diagnosing adults with autism. You may want to check out our Resource Guide here:http://www.autismspeaks.org/community/fsdb/category.php?sid=12&cid=110
1:29
Comment From laura

thank you. Michael is currently in EI,OT,PT and speach. we just want to make sure we are getting him all the help he needs

1:30
It is key to know your child’s rights. That way you will be able to get all the services he needs and be able to properly advocate for him. Visit this page to learn more:http://www.autismspeaks.org/community/fsdb/category.php?sid=12&cid=110
1:30
Comment From Oma

I take care of my 5 year old grandson who was diagnosed with Autism last year. He has made tremendous progress but one thing we just can’t seem to get is him staying dry at night and during rest time. He is trained otherwise during the day and rarely has an accident. He also has big problems with chronic constipation… Any tips on how to help him stay dry? He wears pull ups at night… but not during naptime.

1:31
Hi Oma – This may be something that your grandson’s pediatrician can help with. They may be able to refer you to another specialist to get the proper help he needs
1:31
Good for you in trying to understand the problem. You are a great grandparent advocate!
1:32
Comment From Cindy

thanks for the tool kit–printing now and will sit back and red it this afternoon….much appreciated…….

1:32
That is great Cindy!
1:33
Comment From Oma

I will ask again. when I go to my new pediatrician. The last one gave medication for it, which my grandson hated and I ended up not giving. He is very sensitive to taste and smells and this stuff was awful…

1:33
Comment From Oma

I hope his new pediatrician will be able to help further.

1:33
What you are doing is right. You know your grandson best and continue to work and see what methods agree best with him
1:34
I’d like to invite everyone to sign up for our Community Connections newsletter
1:34
Community Connections, published monthly by the Autism Speaks Family Services team, aims to increase opportunities and awareness for people with autism and their families in their local communities.Each month’s newsletter explores a relevant topic with practical tips on dealing with everyday situations, links to local resources, and stories from experts and families who share their successful experiences.
1:35
This month’s Community Connections will be able ‘Back to School’ and how best to ease the transition for your child with autism
1:36
Comment From Oma

One last question, do you have any advise on how to make dentist visits easier?

1:36
Yes we do! The Dental Tool Kit!
1:37
Oral health is a very important component of healthy daily living. But for some children with autism, oral health habits can be challenging. Autism Speaks has teamed up with Colgate and Philips-Sonicare to create a dental guide and video to provide tips for improving oral hygiene at home, as well as information about how parents and dental professionals can make a visit to the dentist’s office less stressful and more productive. Our hope is that this guide will provide information for families to help begin a lifetime of good oral care.
1:37
Comment From Mae

I live in Ga, my grandson is 10 years old, could you please tell me where I can find assistance with medical and doctors visits. Where can I find support in my area I live in a small town..

1:37
Hi Mae – Autism Speaks Resource Guide is available online
1:38
Because you live in a small town, be sure to adjust the radius when searching by your zip code.

1:39
What type of assistance are you referring to? Financial or identifying professionals?
1:39
Comment From Sara

my son Andrew 2 1/2 just passed away he had ASD and epilepsy, and there is no transition assistance no foundations I could find to help single parents or parents who were not able to work due to caring for thier child, are there foundations that help financially in my area churches donate to CARES but they help $50 for rent or electric but not both… What am I to do?

1:40
Hi Sara – first let me say how sorry I am about your loss. Here at Autism Speaks we care about you and your family
1:40
AutismCares provides support for families affected by autism during natural disasters and other catastrophic life events. AutismCares helps families to cover costs associated with critical living expenses such as housing, utilities, car repair, day care, funeral expenses, and other essential items on a case-by-case basis.
1:41
Comment From Oma

This is awesome! Thank you! I signed up for your newsletter too. I am so grateful for all these resources. Caring for my grandson is an ongoing learning experience and all of this helps tremendously.

1:41
Great Oma! We are so happy we can help!
1:42
Comment From Amanda

I have a 6yr old son who was diagnosed 3yrs ago. We just moved from wisconsin to saint paul minnesota. I am having trouble finding a new doctor and programs here. Any ideas

1:43
It is best to get out in the community. Calling local agencies and talking with other parents are often the best ways to get a referral
1:44
Comment From Sara

Are there any grievance assistance for the loss of an ASD child?

1:44
Sara what you are doing is right and it is very important for you do to. You must take care of yourself. Seek a professional counselor in your local community
1:45
Comment From Mae

finincial and different support group with special help

1:46
Finding other families in your community affected by autism is truly the best way to get support
1:46
and also help to identify local agencies who can help. Being part of this chat is also a great thing to do!
1:46
Come back next Wednesday!
1:47
Comment From Sara

Thank you for your assistance he passed on the 23rd of July and everything seems unreal…

1:48
We are here to offer as much support as we can. Please be sure to contact AutismCares to help with financial assistance. Also please seek counseling in your local community
1:48
Comment From Angela

My son was diagnosed last week with high functioning Autism, he will be 4 Aug 25. Not potty trained yet among other things, any tips on potty training??

1:49
You can order the Asperger Syndrome and High Functioning Autism Tool Kit for FREE http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
1:49
You should be able to find tips about potty training there
1:50
Comment From Mae

I will come back chat has been very helpful.

1:50
Good we are so glad!
1:50
Comment From DeLanie Brewer

My son is 16, moderately autistic but 95% non-verbal at the moment, and within the last year has developed several patterns that look less autistic and more O.C.D.ish. Also, at the same time, although his speech has never been great– he’s gone from being about 60% non-verbal.. to about 95% to sometimes we cant get anything out of him. He tries, but it’s as if he cant the word out. Then, when he does it becomes like a “tick” that he repeats over and over for about a minute- literally. We’ve done brai scans… which were normal. Everyone I’ve talked to here in Okc is clueless- as am I. Any advice…?

1:50
Hi Delanie – you must keep searching for a professional that can meet his needs and help to sort this out.
1:51
You can order it here for FREE!
1:51
Are you in Oklahoma?
1:53
The Autism Treatment Network was established as the nation’s first network of hospitals and physicians aiming to bridge gaps in knowledge and understanding and to improve treatment for individuals with autism.
1:53
Comment From DeLanie Brewer

Yes

1:54
There isn’t a location in Oklahoma, but you may want to seek the closest one for a referral
1:54
Comment From DeLanie Brewer

What kind of professional would you suggest..? He is on state medicaid– so our resources are pretty limited

1:55
I think a psychiatrist or other specialist would best understand the overlapping conditions
1:56
Comment From Robbin

Hello: I have a daughter who is 19 years old. She was diagnosed as ADD. She started college 2 years ago about an hour and a half away from where we live. She had a real hard time adjusting and locked herself away in her room without going to any of her classes for two months. She anxiety when it comes to speaking with people and has been exhibiting some Autistic like behaviors. We also have a son who is 16 with Aspergers and my daughter stated that she has some of the same feelings as he does. Nevertheless, we are beginning to think that she may have Aspergers also and was just misdiagnosed. Where can I get her evaluated for Autism as an Adult? We live in NC

1:57
Hi Robin – why don’t you try getting a referral from your daughter’s primary care physician?
1:58
You should also check out our Asperger Syndrome and High Functioning Autism Tool Kit http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
1:59
Comment From Maribeth

My son 8 yrs old and newly diagnosed with ASD. We are trying to find OT for him, to help with his handwriting and social skills. There isn’t ANYWHERE in our county that takes our insurance. How do people find help when they can’t pay $70 or more per sesion?

1:59
Hi Maribeth – you should visit our Resource Guide to find an OT for him. Have you requested OT through the school district?
2:00
You can search the Guide according to your state
2:01
The costs of services can become outrageous. Luckily, we have the folks at Autism Votes working to represent autism familieshttp://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm.
2:01
We are so happy you all chose to visit our ‘Office Hours.’
2:02
It is so important for people to get meaningful information that is updated and readily available to help you in the day-to-day.
2:02
Comment From Maribeth

I am hoping that we will be able to get him help through the school. I have a meeting set up, but from what I am told, it is very difficult to get approved for it where we live. (palm beach county). It is mild, so I am trying to prepare myself ifthey don’t approve it

2:02
Way to go Maribeth! You are doing the right thing, just try and stay positive and keep advocating!
2:03
Be sure to check out our page of Tool Kits here:http://www.autismspeaks.org/family-services/tool-kits
2:04
Comment From Oma

Thank you for providing this service. It’s great to see others’ questions, too, and to see your answers. I downloaded quite a few things just from following the links.

2:05
We are glad you are using our resources!
2:05
Keep us posted on your progress!
2:06
Comment From DeLanie Brewer

This is sooo cool, THANK YOU!!! I don’t know why, but I’m sitting here in tears. –Thank you!

2:07
No, DeLanie Thank you for joining! Be sure you are all taking care of yourselves. This is a lifetime of advocacy and sometimes you just need a break.
2:08
We are always here to help point you in the right direction. Never hesitate to call the Autism Response Team. Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org
2:09
We have noticed there are several adult questions. Recently, Peter Bell was featured on PBS’s ‘Need To Know’ and he covered this topic. To watch the segment visit our Blog.http://blog.autismspeaks.org/2011/08/02/peter-bell-featured-on-pbss-need-to-know/
2:12
We have also been creating discussion around ‘Topic of the Week.’ This week, we are preparing to head back to school. Visit our Blog and tell us how you prepare!http://blog.autismspeaks.org/2011/08/01/back-to-school/
2:15
Comment From sarah

hi i live in england. i have a 3 and a half year old son with autism. our family is under continues stress, all due to my sons behaviour, he is still not talking propley and has lots of tantrums due to his different understanding. i need help but have nowhere to turn.

2:16
Hi Sarah – you can check out the 100 Day Kit. Be sure to start building a team of professionals that can assist you and your family. We know if can be very stressful, but assembling a team of professionals you can trust and that understand your son is key
2:16
Realize that there are going to be bad days but keep searching and don’t give up.
2:17
It will make all the difference in the world when you find professionals that know your son’s needs
2:18
Comment From Jamie

My daughter has serious texture/gag reflex issues with her mouth. It really limits her food… any advice?

2:18
Hi Jamie – are you working with a professional that can offer you advice? Diet and nutrition is so important and this should be addressed by a professional.
2:19
Here is a link to the Diet and Nutrition section of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/diet-nutrition
2:20
Comment From Jamie

Thanks. Is this something a pediatrician would know, or do I need to have someone specializing in Autism?

2:20
Your pediatrician should be able to refer you to a nutritionist that may have experience in both feeding issues and autism.
2:21
Comment From Jamie

Thanks so much!

2:21
Your welcome!
2:21
Comment From Guest

hi! The only problem my son doesn’t seem to have is eating!! He does, however, have a vocabulary of zero and looks like a third-base coach with his sign language. He’s working with a speech teacher but we seem to be at a stand-still… are there any suggestions or resources that you can recommend to help us develop his speech more?

2:22
Well you must ask, “Why is he at a stand still?” As a parent you always ask why is he not making progress with his speech.
2:23
The discussion should be between you and professionals trying to figure what ways can help drive his speech development. Sometimes it can be can be frustrating, but just be sure to understand what his issues are.
2:24
Comment From Guest

My son is now 19 and he wants to fit in with other young people however, they simply take advantage of him and manipulate him into things that are destructive and hurtful to him. Still, he wants to be with them. How can I get him to see the danger? How do I NOT lose patience? He has always been this way. ANYONE can manipulate him, take his property and coerce him into doing things.

2:24
This is so hard for a parent to watch. You must help him develop self-advocacy skills.
2:25
The Transition Tool Kit covers the importance of self-advocacy skills.
2:26
Comment From Amber

my son is 6 and entering 1st grade. I worry about his aggression. He is currently taking Stratera. Any thoughts or suggestions?

2:27
Hi Amber – it is important that you communicate these feelings with your IEP team. Everyone must be on the same page about addressing his aggression issues
2:27
You should seek to have a behavioral therapist work with your son on this
2:28
The first step is to make sure you communicate your concerns with the IEP team or your professional network. Be sure loop in your pediatrician
2:28
Comment From Jessi

I’m searching for info for adults, all I can find is chidren’s resources

2:28
Hi Jessi! We have plenty of adult resources
2:28
The Transition Tool Kit can be found here :http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
2:29
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
2:29
Advancing Futures for Adults with Autism(AFAA) is another initiative that Autism Speaks in involved in.
2:30
We are working hard to bring attention and awareness to adults with autism. You can also search our Resource Guide by your state for adult services, here :http://www.autismspeaks.org/community/fsdb/search.php

2:31
We would like to thank you all for participating in our first ‘Office Hours.’ We hope that you found this session helpful. All of the information will be archived so you can return to it whenever you need.

2:31
Please join us again next Wednesday and at 1pm EDT! We look forward to next time

2:32
Remember, you can always contact The Autism Response Team: Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.

A Boy and the Budget

February 17, 2011 11 comments

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

President Obama’s Federal Budget for the Fiscal Year 2012 allocated funding to various programs and initiatives designed to help “Win the Future for People with Disabilities.” These proposals include: expanding autism research, increasing support for workers with disabilities, and increasing funding for the education of children with disabilities. Click here to read more.

Have you met my son Jack?  He’s pretty awesome. Ok, I’m kind of biased, but he really is.  He’s handsome and smart, with a goofy sense of humor.  He loves to play the violin, go bowling with his friends, eat pizza and watch old Tom & Jerry cartoons. He has two brothers, who are equally awesome, and they spend a lot of time being gross boys together. You know, laughing about gross boy things. Jack likes hotels a lot and spends a lot of time researching them, because he wants to own a hotel when he grows up.

Sounds pretty typical on paper, doesn’t it?  Jack has autism. And in that one word, anything typical goes right out the window… and fast.

His past, present and future are anything but typical.   As his mother, I am plagued by questions about how my baby boy “got” autism.  I am constantly fighting someone for access to insurance coverage, or for his therapies, or for appropriate educational services.  Like most parents of a child with autism, I lie awake at night wondering how my child will support himself, because although he is very smart, the social and communication deficits that are the core of autism will make sustainable employment very challenging – and that’s if there is even a company that would hire him.

One out of every 110 people in America today is a “Jack.”  The tsunami is coming.

In my life as Connecticut’s advocacy chair, I try to read and process as much as I can about policy and legislation that may impact all of the “Jacks” here in my state, so I can be as effective as possible when communicating the needs of our community to state and federal policy makers.  I am NOT a policy maker, but I’m a mom advocating for my very own Jack and every time I see “autism” in a legislative document, I consider it a victory.  Having been at this autism gig for over seven years now – helping my state enact autism insurance reform law, as well as cultivating a close working relationship with elected officials —  I also have a pretty decent understanding of what it takes to get policy-makers to pay attention to the issues that affect individuals with disabilities like autism.

I recently read President Obama’s federal budget proposal for people with disabilities, which became the impetus for this blog piece.  I was pleased to see that the President’s proposal included funding for research through the NIH (National Institute of Health), so that we can get to the root of the autism epidemic and provide appropriate treatments for our families.  The President’s proposal also includes “a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset state and local education costs for children with disabilities.”  Among other recommendations, the President’s budget plan proposes funding to encourage workforce innovation to make jobs accessible to people with disabilities (as Walgreens Distribution Centers has done) and suggests appropriating “$24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities.”

I might actually sleep a bit tonight knowing these proposals exist. I’m also comforted knowing that Autism Speaks has developed resources for kids like Jack as they make their way through adolescence towards adulthood (see links below).

Make no mistake, this is not a political endorsement.  Autism is not defined by a political party. It is defined by the families who live it day in and day out.  That being said, I do hope our elected officials in Washington, DC read this blog entry and take it to heart.  One out of every 110 people in this country are relying on them to help us take care of our precious children.

For more information:

Read Summary of President Obama’s FY2012 Federal Budget for Individual’s with Disabilities

Download the Autism Speaks Transition Tool Kit

Visit Advancing Futures for Adults with Autism (AFAA) website

Transition to Independent Living (TIL) – A Program of Opportunity

December 2, 2010 2 comments

This Family Services blog post by Marianne Sullivan, the Assistant Director of National Outreach and Resources for Autism Speaks. Marianne is the mother of an 18-year-old young man with autism.

California’s Taft Community College offers an invaluable Transition to Independent Living (TIL) program that provides adults with developmental disabilities the opportunity to work, live independently, and participate in their community while they earn a Transition to Independent Living certificate.

About two weeks ago, a group of us from Autism Speaks visited the Taft program in Kern County in hopes of gaining insights into this successful program.  As the mother of a son with autism who just celebrated his 18th birthday, and as a member of the Family Services Team at Autism Speaks, I know the impact of watching a child with autism become an adult with autism. I know all too well that the future will bring yet more concerns. For me, one of my greatest sources of hope comes from all of us working together to figure out what works and what doesn’t for the growing numbers of adults with autism.

The TIL Program at Taft is a two-year residential program that began in 1996. The program has a proven track record, with 82 percent of its graduates living independently. Currently, one third of the TIL students have autism, and the staff at TIL expects to see the demand increase as more and more individuals with autism transition to adulthood. Jeff Rose, the Director of Student Support Services, said that this year, one out of every two applicants seeking admission to the program is an individual with autism.

Students come from all over California to enroll in the TIL program, which immerses participants in an inclusive environment on a mainstream campus. The program provides instruction, training, and support in real world skills, with an emphasis on vocational skills; in other words, it helps individuals work toward obtaining real jobs for real pay. As part of our tour, we visited the dorm rooms of first year students, along with several homes in the community that house students during their second year. We found that students were successfully taught how to move about their community easily; going to grocery stores, churches, coffee shops, and movie theaters.

We had the opportunity to speak with a group of TIL students during our tour. Most shared their personal experiences in the program. Autism Speaks Board Member Brian Kelly asked the students, “What is your dream job?” Students gave a variety of answers, including a preschool teacher, a cartoon artist, and an IT support specialist. Although the dreams varied, the students expressed the motivation and commitment they will need in order to go after their dream job. They also recognized the TIL program as a stepping stone towards achieving their goals. The important insight our group took home is that students at TIL will have the opportunity to do just that. We all know that people with autism need to have opportunities to learn how to live independently, and get and maintain paying jobs. We also know that the more opportunities these individuals have, the greater skills and confidence they will be able to develop, and the greater the chances of realizing their goals.

Autism Speaks recognizes the tremendous need for programs such as Taft and asks other community colleges across the country to join Taft in developing transition programs to better prepare students with disabilities. In July 2010, Advancing Futures for Adults with Autism (AFAA)  developed an agenda for life-long living and learning for people with autism. AFAA’s agenda represents new projects/initiatives, and policy changes that will influence the quality of life for adults living with autism today!

For more information about the TIL program at Taft College visit www.taftcollege.edu

or call (661) 763-7775. You can also e-mail requests for information to intake@taftcollege.edu.

Taft’s TIL program has been awarded a Federal TPSID Grant and is part of the consortia of institutions under the model comprehensive Transition Programs for Students with Intellectual Disabilities (TPSID). There are 27 TPSID grantees, located in 23 states, http://www.ed.gov/news/press-releases/us-secretary-education-duncan-announces-109-million-awards-under-new-programs-he

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