Need to Know

Transition to adulthood starts at age 14 in Pennsylvania!***Please remember that these ideas are not in any particular order and may not fit your child, but each one may be worth looking into.  Our children are not one size fits all!  You need to be your child's advocate and do your own due-diligence.  It is not up to the child's teacher, health agency, transition coordinator, etc. to secure anything for your child, but you should know what their job requires them to do and use their help to help you and your child be successful in your journey to a brighter future!

What will happen to your adult child?  Scroll down to facts and information, along with special documentaries and articles on this subject!

***this list is a work in progress...you may want to visit your state resource list on Autismspeaks.org...


4/28/14  I have found the Montgomery County Wikipedia Transition Files to be very, very helpful.  Tons of updated information and even more resources for adult services after high school!  http://montcotransitionwiki.wikispaces.com/Transition+Teacher+Page
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  • Secured a mentor for Kyle in September 2014!Trail Guides  267-507-3490 www.mhasp.org Trail Guides is a mentoring program for young adults between the ages of 18-26 who experience mental health challenges. Our mentors provide encouragement and support to young people on their journey through recovery. Kyle's mentor currently works on travel training and on the job training for Kyle.  Helps Kyle to become more independent.

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4/9/14-Many supermarkets, like the local ShopRite's and Giants', are hiring differently abled workers.  Noteworthy: Recently, the new Giant on Bethlehem Pike, over in Flourtown, PA, is doing a terrific job at hiring special individuals.  The Employment Manager takes great pride in employing many people with learning differences.  :)

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3/4/15-Office of Vocational Rehabilitation Early Reach Initiative   (not sure if this is really working for everyone in every county)

“What do you want to be when you grow up?”  This is a question many of us were asked as we were growing up.  For youth with disabilities, this is often a daunting question that is filled with uncertainty and lack of information.  In order to assist youth with disabilities better prepare for their transition into the world of work and independence, the Office of Vocational Rehabilitation (OVR) has started a new initiative called Early Reach.  The Early Reach Initiative will add a trained social worker to the rehabilitation team in OVR’s Bureau of Vocational Rehabilitation Services.  The working title for the social worker position will be Early Reach Coordinator.  An Early Reach Coordinator will be assigned to each of the fifteen Bureau of Vocational Rehabilitation Services district offices to connect earlier with youth with disabilities, their parents, local schools and other community agencies.  

The purpose of this connection is to reach out to youth with disabilities, beginning at age 14, so that they know more about OVR services.  In addition, Early Reach Coordinators will be knowledgeable about the full array of other services that are available to youth with disabilities so these youth can better prepare for vocational choices and goals after they leave secondary education.   To provide informational presentations and consultation to school personnel, community agencies, youth with disabilities and families to outline the services offered by the Office of Vocational Rehabilitation (OVR).To provide education and consultation to school personnel, community agencies, youth with disabilities and families to leverage the full array of services offered during the secondary school years to best prepare youth with disabilities for OVR and vocational goals.  Individual Outreach To assist youth with disabilities in planning for and making application for OVR services.To provide vocational consultation and linkages to resources that will assist youth with disabilities pursue participation in the workforce.

The optimal time for OVR to begin working with a youth or young adult with a disability is when the youth or young adult is ready, able, and available to engage in the activities necessary to establish an employment goal. These activities include the development of an IPE and participation in vocational services in order to become employed. The time at which this occurs is unique to each individual. Typically, this is two years prior to graduation. However, it may occur later due to onset of disability and the individual's ability to pursue competitive employment at that time. It should occur at a time when the youth or young adult becomes interested in pursuing an employment goal and becomes available for vocational exploration.
 
An appropriate referral to OVR is any student with a disability who may need vocational counseling and guidance as well as assistance in preparing for, obtaining, or maintaining competitive employment. Competitive employment is a job in a community integrated setting, earning at least minimum wage. Students who have an Individualized Education Program (IEP) under the Individuals with Disabilities Education Improvement Act (IDEA), students who have a Section 504 plan under the Rehabilitation Act, and any other students with disabilities who may or may not require specialized services in school including Drug and Alcohol and Mental Health Issues are appropriate referrals to OVR. If there are any uncertainties regarding who would be an appropriate referral, contact your local OVR office to further discuss it.
 
A referral to OVR can be made by anyone, including a student, a family member or school/agency personnel. Students under the age of 18 must have parent/guardian permission to become involved with OVR services.
 
Referrals can be made in person, by phone, or online at www.cwds.state.pa.us. Contact the local OVR District Office, or the designated OVR Liaison to determine the preferred method. At the time of the initial referral, OVR will need the following information about the student to facilitate the application process:
  • Name
  • Address
  • Telephone Number
  • E-Mail address (if applicable)
  • Date of Birth
  • Social Security Number
  • Gender
  • Valid Photo ID
  • Brief Statement About the Student's Disability

Eligibility Determination

OVR's program is based on eligibility. It is not an entitlement program. A student must be determined eligible by an OVR Counselor. The counselor must first determine that the student has a diagnosed disability, and that the student's disability substantially interferes with his/her ability to prepare for, obtain, or maintain employment. Finally, there must be a demonstrated need for OVR services in order for the student to successfully pursue or retain employment.
 
Only an OVR Counselor, who has special training and experience, can determine if an individual is eligible for OVR services. Existing records (medical, psychological, vocational, etc.), staff observations, family input, and student self-evaluation help the OVR Counselor make an eligibility determination.
 
During the eligibility determination process, the OVR Counselor assesses to what degree the individual's disability significantly impacts, or limits, his/her functional capacities in the following areas: mobility, self-care, work tolerance, interpersonal skills, work skills, communication, and self-direction. Services will be provided based upon significance of disability and the availability of funds.

Financial Need

The financial needs test determines to what extent the student may be required to contribute toward the cost of certain OVR services. These services will be outlined in the IPE. However, diagnostic and evaluation services, vocational counseling and guidance are always provided without regard to the student's and/or family income.
 
Documentation of household income is needed such as a tax return, W2, pay stubs, etc. If the individual is receiving Social Security Income (SSI) or Social Security Disability Income (SSDI), a copy of his/her award letter or monthly benefit statement is required. Diagnostic and evaluation services, vocational counseling and guidance, rehabilitation teaching, orientation and mobility training, and job placement assistance are always provided regardless of the student's and/or family income.

Individualized Plan for Employment (IPE)

The cornerstone of the OVR process is vocational counseling and guidance provided by an OVR Counselor. After the student is determined eligible, he/she works closely with an OVR Counselor to clearly define an employment goal and jointly develop an Individualized Plan for Employment (IPE).
 
The IPE is developed to meet the student's unique vocational strengths and needs. The student's interests, strengths, and abilities guide the IPE development. The IPE Plan will be developed based on results of testing and evaluations as well as the client's interests and aptitudes. Job market and employability will also be considered.
 
The IPE identifies the student's vocational goal, the services needed to attain the goal and service providers that are to be utilized to assist the student to reach his/her specific goal. The length of time from OVR referral to successful employment varies widely depending on the content of the IPE and the unique circumstances of each student.

Coordination of Services with other Agencies

A student may require support from other public, private or community agencies that will serve a role in the student's Transition from School to Work. These agencies may provide long-term supports that the student may need to achieve and maintain his/her employment and independence as an adult. Representatives from these agencies should be invited to participate in the development and implementation of a student's Transition Plan while the student is in school. These agencies include but are not limited to:
  • Department of Public Welfare
        Office of Intellectual Disabilities
        Office of Mental Health
        Bureau of Autism Services
        Office of Long-Term Living
        Office of Children, Youth, and Families
  • Department of Health
  • Department of Labor and Industry
        Workforce Investment Act Youth Program
  • Institutions of Higher Education
  • Other public/private agencies and community resources

Competitive Employment and Case Closure

The goal of receiving OVR services is for the customer to obtain and maintain competitive employment. This goal is achieved when the individual is working in a community-integrated setting earning at least minimum wage in a job that is consistent with the individual's unique strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice. Customers will, ideally, work in a position of employment to become financially self-supporting and independent.
 
An OVR case is closed when the customer achieves his/her vocational goal and is successfully employed for at least 90 days, at which time the case is closed. If necessary, post-employment services may be available after a case is closed. Other agencies may be able to provide funding to the individual for longterm supports necessary to maintain employment.

How Can School/Agency Personnel and OVR Help One Another?

Starting at a young age, students benefit from a systematic approach to career development. OVR counselors can provide technical assistance to school/agency personnel to assist in the development of learning activities and opportunities that are centered on career exploration and development. To prepare students for employment and OVR involvement, school/agency personnel can work with OVR staff to:
  • Evaluate the strengths and needs of the students being referred.
  • Utilize ongoing assessment techniques to effectively assist students plan and prepare for employment.
  • Develop a career portfolio and utilize it as a tool for the student's self-development.
  • Create ongoing work-based learning opportunities, such as job shadowing, mentoring, and paid and unpaid work experiences with the students.
  • Develop "Team Teaching" activities on topics such as: OVR Orientation, Career Exploration, Self Awareness, Self Advocacy, Self Determination, Disability Awareness, Eligibility vs. Entitlement, Job Readiness, Job Seeking and Job Retention.
  • Provide presentations to staff, students and families regarding Transition Services.
  • Learn about each other's policies, operations and procedures.
  • Identify and work through barriers to achieve an effective and collaborative process for transition from school to work.

 

Implementation Timeline

*The Early Reach Initiative will be phased in to all fifteen BVRS district offices by the end of 2014.  

Phase 1 – Fall 2013 District Office Early Reach Coordinator is Cameo Posey 215-560-1951 caposey@pa.gov  

DuBois Kimberly Golding 814-371-7340 kgolding@pa.gov   

Harrisburg Stacy Shirk 717-346-2783 stshirk@pa.gov  

Norristown Stephanie Shuler 484-250-4340 ext. 161 sshuler@pa.gov   

Philadelphia Jill Grossberg 215-560-4193 jgrossberg@pa.gov   

Wilkes Barre Mary Jane Saras 570-826-2011 ext. 110 msaras@pa.gov  

Phase 2 – Spring 2014Allentown, Altoona, Erie, Pittsburgh (2), Reading, Washington, York

Phase 3 – Fall 2014Johnstown, New Castle, Williamsport 

Questions can be directed to the OVR Early Reach Initiative Manager, Michele Bornman, at 717-787-6005 or mbornman@pa.gov.

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PYLN-contact-Mary Beth Morgan

Statewide Youth Transitioning Coordinator - Region 7
Liberty Resources Inc.
714 Market St. - Suite 100
Philadelphia, PA 19106
Phone # 215-634-2000 ext: 335
(She will help you and your child even if you are not apart of her region; she will also let you know who your regional contact should be!)

  • PYLN-The PYLN is a group of young adults with disabilities who want to make a difference in the lives of youth in Pennsylvania. The mission of the PYLN is to develop the self-determination, empowerment, and leadership of youth that promotes successful post school outcomes in the areas of education, employment, independent living, and health and wellness among youth and young adults throughout Pennsylvania.
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The Standard Steps before and after leaving High School:

 

Bureau of Autism Services at 1-866-539-7689. 

Mailing address:  Department of Public Welfare

Bureau of Autism Services

P.O. Box 2675; 605 Health and Welfare Building

Harrisburg, PA  

Founded in 1960, Skills of Central Pennsylvania (Skills) is one of the oldest and largest human service organizations serving people with disabilities in central Pennsylvania. As of 2009, Skills provides residential, community, employment, and behavior support services to individuals with physical, developmental, and emotional disabilities in 16 Pennsylvania counties and employs over 1,000 staff. Skills also provides services for children and adolescents in county custody. 

Skills of Central Pennsylvania receives most referrals for services through the Department of Public Welfare.  Local Support Coordinators can be contacted through the County MH/MR Offices.  

Bureau of Autism Services, Office of Developmental Programs. The information shared in this site is intended to communicate the Department of Public Welfare’s efforts to enhance the quality of life and independence of Pennsylvanians with Autism Spectrum Disorders (ASD), and to support their families and caregivers. Please scroll through this page to learn about the work we are doing to help families and adults with autism in the Commonwealth.       

College?  -Montgomery County Community and Eastern University offer courses with accomodations vased on individual needs.  Also, there is The Hiram G. Andrews Center in Johnstown provides vocational training and comprehensive rehabilitation services to people from across the state. OVR’s Bureau of Blindness and Visual Services also provides specialized services to blind and visually impaired individuals. These services are designed to increase an individual’s independence and employability.

 

Vo-tech School?-check in with your school district to find out which technical school students can attend.  With the proper supports in place our kids can excell in these hands-on settings.

Job Coach???  www.DOMOORE.NET- A job coaching Service for Adults with Disabilities, created and led by Karen Whitton.  She directly helps our young adults find volunteer opportunities in their own communities.  Ms. Whitton came up with the name DOMOORE because her first clients last name was Moore, and his Mother wanted Karen to help him "do more".  Karen Whitton accepts funding through Medical Assistance!  She has been sucessful in reaching out to many local organizations such as the ElmWood Park Zoo, Odyssey Health Care Center, Neighborhood Recycling Centers, and much more, including entire school communities. Karen cares deeply about her clients and their sucess rate is important to her.  She is one of a kind and not jaded.  If you can envision a local job opportunity, Ms. Whitton will help you and your child secure it.
*As of September 2013, Karen has been contracted to help almost a dozen students in Mecthacton School District. 

Contact: Karen WhittonM.Ed., Managing Director-421 Alexandria Drive Norristown, PA 19403  610-304-1806 

 

6/4/14-NEW-Do you know a senior that is about to graduate or has recently graduated high school and doesn’t have plans after high school?  Or, a young adult between the ages of 16 and 24 and is looking to obtain their GED or technical training certificate.  Please see the attached flyers regarding the next Job Corps information session scheduled at the Human Services Center through August 18th.  Yvonne Vaughn, Job Corps Recruitment Representative, will share information, answer questions and collect referral information from any interested youth. 

Job Corps is a residential training program for individuals ages 16 - 24.  Job Corps includes educational and vocational training. Job Corps operates 24 hours a day, seven days a week, to offer students the stability and support needed to positively transform their lives. Job Corps' academic and vocational training programs offer self-paced courses that meet individual needs and provide the skills necessary for graduates to successfully enter the workforce or continue their education. Students benefit from computer-managed instruction and training in more than 100 vocational fields.(*Note: Most of these are 2 hours away from Montgomery County.  There is currently 1 Day only program located in Philadelphia.)

Students receive comprehensive career training in a number of specialized fields; health education; social skills training; counseling; student government and leadership programs; meals, lodging, and clothing; and post-program job placement and support.

While attending Job Corps participants earn monthly spending money.  No cost campus living with meals is provided.  Books, tools, uniforms and medical and dental care are provided at no cost.  Upon graduation receive up to $1,000.

If the student is ready to make an application to Job Corps, they should bring the following documentation/information to the information session and Yvonne Vaughn will follow-up with any interested youth.

 

  1. Social Security card original
  2. Names of SS Card and Birth Certificate must match
  3. Proof of income: public assistance, paystubs, medical card, and or SSI income
  4. High School diploma or Transcript
  5. Other school documents if any, i.e. IEP, etc.
  6. Letter from Shelter if applicable
  7. Vaccine Record, immunizations
  8. Birth Certificate,  State ID Card, or Driver’s License

 

To find out more about Job Corps, contact a member of the Youth Empowerment Program at 610.278.3937.  

Informational meeting
1430 Dekalb Pike Human Services Building (community room)
June 16, 2014 @ 10:30 am
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Learning to be your own Advocate???  
  • PYLN-The PYLN is a group of young adults with disabilities who want to make a difference in the lives of youth in Pennsylvania. The mission of the PYLN is to develop the self-determination, empowerment, and leadership of youth that promotes successful post school outcomes in the areas of education, employment, independent living, and health and wellness among youth and young adults throughout Pennsylvania.
  • CHOP Career Path  The goal of CHOP Career Path is to bridge the gap between high school and the world of work for young adults ages 18-22 with chronic illness and/or disabilities.  By using job coaches and internships at The Children’s Hospital of Philadelphia or in the community, the program assists young adults with making the transition from adolescence and school to adulthood and work, with an emphasis on vocational training and independent living skills. For more information:  Email the CHOP Career Path staff Call Program Manager Jamie DiIanni, MS, CBIS, at 267-426-1316
  •  http://www.wrightslaw.com/WrightsLaw:  Transition Planning for Life;  Parents need to start thinking about the transition to adulthood early. Your child must develop the skills he needs to become as independent as possible. Transition should help your child understand his disability and what he needs to be successful. Does your child want a career in computer science? Does your child need public bus transportation training?  In this issue Jan. 29, 2013 of the Special Ed Advocate, we take a closer look at transition planning and transition services to ensure that our children are prepared for further education, employment and independent living.
Making your own living??  
1)  www.artistswithautismunite.webs.com  Although this group originated in Florida, they now have a division based out of West Chester, PA.  The Main Goal of the organization is to provide guidance, expertise, and venue resources to aspiring artists with autism.  We strive to reach this goal by encouraging the members and/or their sponsors to:  Actively participate through membership meetings, art  shows, opening receptions, and various events;  establish their own micro-enterprising business  that will foster self enrichment as well as a source of income;  and seek opportunities to promote their artistic talents to the community.***Currently the Director of the PA division of Artists with Autism is Ms. Heidi Halberstadt.  Her son, Jason (who is on the Autism Spectrum), has featured his own artwork in many shows sponsored by this group.  If you would like your child's artwork featured at a local event, don't hesitate to connect with Heidi.  
 


2)  FREELANCE-Advertise/Sell what you can do, what you can make, items you have made, etc. online with a safe and reputable company!

Outofstep.com-  We are a new, free tool for people with disabilities to connect with consumers for their products and services. This tool was designed not only for people with disabilities but equally for all the great folks who work on their behalf. Already, we are receiving great feedback from around the nation! Take a look at our video and seei if it is something that is the right fit for you. You can view it on our home page at http://www.outofstep.com/about/. Thank you for your time!

Etsy.com- Etsy is an e-commerce website focused on handmade or vintage items, as well as art and craft supplies. These items cover a wide range, including art, photography, clothing, jewelry, food, bath and beauty products, quilts, knick-knacks, and toys
Workshop/Group Employment?:

 

  • http://www.gatewayemployment.org/  Gateway Employment Resources 342 West Ridge Pike Building OneLimerick, PA 19468  Gateway's sole function is to secure jobs for our participants and we put all of our energy and resources towards this goal. This targeted focus is what has allowed Gateway to become one of the most successful employment agencies in our area. 342 W. Ridge Pike Bldg. 1  Limerick, PA 19468  Contact Diane Haeberlein-program director:  610-489-9699 x 109

  • http://www.autismlivingworking.org/ALAW demonstrates that adults with Autism Spectrum Disorder (hereafter “autism”) can be accommodated in order to live as valued neighbors, workers and full citizens of our Commonwealth. Building on the Autism Pilot Program (now known as the Adult Autism Program) developed jointly with the Pennsylvania Department of Public Welfare’s former Office of Social Programs, ALAW promotes appropriate support services and accommodations for adults with autism. 

  • http://handi-crafters.org/Handi-Crafters runs one of the largest employment and support service programs in southeast Pennsylvania. Each year we help over 400 individuals to access rewarding opportunities that promote their independence at different life stages. Through meaningful work, independent living and retirement opportunities we empower individuals to realize their true potential and experience personal fulfillment.

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Our adult children need to have valuable programs, jobs, education, and recreational resources "after the bus stops coming".  I have an 18 yrs. old young man with ASD.  I am proud of all the progress he is making in school, and especially outside of school.  I worry about the routine of school disappearing.  I wish there were "drop in centers", like rec centers, specific to our adult children's needs.  My vision, is for my son, Kyle, to work part-time and travel over to a center where they operate like an adult evening school/rec center with many opportunities to learn new skills in art, music, trades, and life skills. 


4/30/14  To give employees without ASD (known as neurotypical employees) an idea of how to help their future co-workers, the students developed use cases — three-page descriptions of possible situations and how they might be handled. One was based on the story of the employee in India whose transport took the unexpected route. - See more at: http://drexel.edu/now/features/archive/2014/April/SAP-Autism-Consulting/#sthash.NydiFZzw.dpufhttp://

www.cbs.com/shows/cbs_this_morning/video/eAAl6WlgRpAtFOfFVwF7g_Xwq3ELKhkA/software-company-hires-autistic-workers-for-unique-skills/

Announcing
 that Best Kept Secret is now available as a to rent or buy on iTunes! Just click this link:https://itunes.apple.com/us/movie/id725374141 
This documentary shows what can happen if we don't advocate for funding and resources for our children,who will become adults! 
At a public school in Newark, N.J., the staff answers the phone by saying, "You've reached John F. Kennedy High School, Newark's best-kept secret." JFK provides an exceptional environment for students with special-education needs. In Best Kept Secret, Janet Mino, who has taught a class of young men for four years, is on an urgent mission. She races against the clock as graduation approaches for her severely autistic minority students. Once they graduate and leave the security of this nurturing place, their options for living independently will be few. Mino must help them find the means to support themselves before they "age out" of the system.

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Fox 29 News:  Parents Raising their Adult Children with Autism-Fox 29 News featured a brief, but very telling segment on February 7th, 2013.   Parents and their adult children were interviewed about the obstacles they face due to lack of resources and funding. Understanding autism can be difficult and confusing, but imagine having to navigate those issues as your child grows but doesn't outgrow their challenges.  This link above provides some general resources to help you start looking, but nothing concrete was highlighted; no real answers.

Wall Street Journal:  Families Unite to Help Adults With Autism;  By MELANIE GRAYCE WEST  "Society really hasn't prepared for how to handle adults with autism." A version of this article appeared February 1, 2013, on page A19 in the U.S. edition of The Wall Street Journal, with the headline: Families Unite to Help Adults With Autism.


The adult face of autism | Chestnut Hill Local Philadelphia P
The second article in a four-part series on autism. by Sue Ann Rybak. (now, notice the date of Aug. 2012!) The article discloses the fact that once upon a time... a young adult living with Autism, and epilepsy, had a very active social life, until he turned 21 years old. The article is about Jacob Diamond, a resident of Chestnut Hill, PA.  (This is the next town over from where Lafayette Hill, Flourtown, and very close to Plymouth Meeting, PA are located!)  After he "timed out of school, his mother and father noticed some social aggression.  Mrs. Diamond is quoted by stating, “Jacob’s life has changed dramatically for the worse; He went from going to a campus where he encountered hundreds of people doing different activities all day long to sitting at home.” His parents attempted to involve Jacob in a few volunteer programs in Chestnut Hill, PA.  Most companies refused to let their son participate and they even had the supports in place so that Jacob would be monitored while volunteering. A parent and licensed caretaker would be supervising him the entire time.

10 Surprising Things Parents of Autistic Grads Must Know

http://www.thinkinclusive.us/10-surprising-things-parents-of-autistic-grads-must-know/#comment-1403782305

 

10 Surprising Things

By Kathy Porter

Ready or not, you will soon be the parent of a high school graduate. If your son or daughter is on the autism spectrum, like mine, you might feel a tiny bit scared underneath all the euphoria of this wonderful time. Behind you trail 18 or so years of priceless memories—an uneven mix of happiness, frustration, extreme awfulness, fun adventures and educational milestones.

Ahead of you is a world of transition: the in-between stage that prepares your teenager for adulthood. The good and the bad news? There is no road map for what comes next. I know because 10 years ago, my son graduated from high school. Two years later, I searched desperately for that road map because he didn’t seem to be moving forward. Nine years after that, I realized that my family had cobbled together a hard won road map of our own.

Sure, there were days when we flew by the seat of our pants, dark nights when we didn’t have answers for the questions we’d learned to ask. We also had days when everything fell into place or when someone reached out to say, “Of course I’ll help you!”

Part of our story was finding out that despite his Asperger’s Syndrome diagnosis, our son didn’t qualify for a service coordinator after high school. He was, however, eligible for educational funds which would one day be a fantastic resource.

But right out of high school, diploma in hand, all my son wanted was a job and a car.

That decision put into play thousands of steps and an infinite number of decisions bringing him to where he is today. Looking back on everything he’s accomplished, I see 10 surprising things that I believe every parent of an autistic teenager transitioning into adulthood should know.

1. Learn to outsource

Let technology and practical choices work for you. Outsourcing is a pretty savvy time saver plus it takes the drudgery out of some necessary chores. Be smart and teach this to your teenager.

I’ll never forget the look on my son’s face when he found out that he didn’t have to type his own resume. Don’t get me wrong. He assembled the content. I wrote it all down. Then we hired a virtual assistant to format and type it. Once we had the template stored in a computer file, updates were easy.

2. About those life skills

Don’t accept that developmental delays can’t be overcome. Sometimes, what works best for mastering a particular life skill is to let timing take care of itself.

When he was 22 years old, my son’s independent living skills were assessed as “severely delayed.” At that time, he’d been driving for three years, was doing his own laundry, fixing breakfast for himself and doing all of the outside yard work. Over the next 3-5 years, he figured out how to: repair the kitchen drain pipe without supervision, schedule his own appointments, establish a solid work history, plan and make dinner, and program the GPS app on his smart phone.

3. Networking is more valuable than ever

You have a network of family, friends and professional colleagues. Never shy away from asking for what you need. People are so ready to help you. If you haven’t already joined a local autism support group, now would be the time to do so. You’ll find parents who are exactly where you are. You can help each other. And, you can reach back to offer support to the parents with young children who are now where you used to be. If there’s no local support group, consider starting one.

4. Look for volunteer opportunities

One of the best reasons to volunteer is to become a part of something larger than yourself. You get to spend time with like-minded people who share similar values, make friends, learn new skills; become a better you. If your teenager shows no interest in volunteering the first time you suggest it, ask her again in six months.

Knowing my son’s love for dogs, I thought he’d jump at the chance to volunteer as a dog walker at the animal shelter. The first time I suggested this, he brushed my comment aside. The next time I asked, not only was he ready, he handled all of the details himself. Two years after he started, a full time position as a kennel attendant opened up. One of the employees he knew suggested he apply. So, he did … and, he was hired.

5. Own the journey

If you find yourself in a deteriorating circumstance, don’t waste too much time in negativity. Once the shock has worn off, identify the problem, and then come up with a work-around for the benefit of your teenager that includes professional etiquette.

My husband and I had no reason to suspect that our son’s first job would be a disaster. He’d worked with a social services agency that focused on helping “disabled” adults find employment. Three months into this job, we knew he was in over his head. By that time, the agency had closed its doors. The only support our son had was us.

We sat him down and explained how he could ethically quit this job. Friends of his suggested companies he could target which led to job interviews he set up by himself. When a second company made him an offer, company number one received his two weeks written notice.

6. Find the teachable moments when work-related communication breaks down

In a perfect world, people are thoughtful, kind and respectful. Sadly, we know this isn’t always true. Sooner or later, your teenager will come face to face with a rude coworker. The first time it happens will be awful because she won’t be expecting it. (No one does.) Help her to find the words to defuse the next encounter… because it will happen again.

On two consecutive Saturdays, my son arrived at work, clocked in, and walked into the main lobby. One of his coworkers, a woman in her early 60′s, got up in his face and yelled, “Where have you been? You were supposed to be here an hour ago!” He was devastated but managed to step back, quietly explaining that no one had revised his schedule for an earlier arrival time. Not only did she refuse to apologize to him, over the next two months, she continued to harass him about his job performance.

He had no idea what to say to shut her up, telling me that anything he said might be grounds for “insubordination,” which could result in his being sent home. We spent several weeks talking about the best way to handle this. What could he respectfully say to make sure that this woman never spoke to him like this again?

After coming up with a sentence I thought would work, we practiced until it sounded like a spontaneous remark. The next time he was paired to work with her, she verbally jumped him. Seizing the moment, he said, “Your language is unprofessional and I don’t appreciate being talked to that way.” Her jaw dropped. From that day forward, if she couldn’t say anything nice to him, she said nothing.

7. Should your teenager tell a potential employer about her disability?

I’ve had this conversation with small business owners, people who work in the mental health and social services sectors, my son and one or two human resource professionals. Every single one of them has agreed with me. What they’re in agreement on is that knowing makes it so much easier to adapt job training and ensures that there are no on-the-job misunderstandings. The HR people I’ve talked with are quick to point out that, legally, they can’t ask. But, they’re so willing to listen.

Quite frankly, when our son was 18 years old, we didn’t know to ask. My husband and I assumed that the social services agency helping him find his first job would handle that part. Remember, too, that he didn’t then (and doesn’t now) qualify for a service coordinator. I don’t know if having one would have automatically raised that question. It’s a hard question with no right or wrong answer. The “right” answer is what works for your teenager. Today, my answer, for my son (which he agrees with), is a resounding “Yes!”

8. It wasn’t a bad job—it’s a job that wasn’t a good fit for you

Expect that somewhere in your teenager’s future is a job that she’s going to hate or one that she will be woefully inadequate to do. It’s happened to all of us so the odds are excellent that it will happen to her. Be okay with this.

I understand why my son couldn’t stick around his first job after high school. He was 18 years old drowning in sensory overload. Three months was as much as he could handle before his survival instincts kicked in. When the emotional dust had settled, he was a little wiser about what jobs he didn’t want. Better yet, when potential employers asked him for the best and worst stories from his work history, he had the perfect “how I got hit in the head with a purse by a woman who wanted to get into the public rest room that I was cleaning” story to share.

9. Explaining scripts can help create reasonable job accommodations

Set aside the alphabet soup of labels and educational jargon you’ve collected over the years. Turn them into conversational language (scripts) to describe your teenager’s learning style and work habits. Come up with 1-4 sentences that describe 2-3 good accommodations for how a job can be adjusted to play to your teenager’s strengths.

Here are two scripts my son and I wrote that might work for your teenager:

A. “Having Asperger’s Syndrome does affect my work style and what I’ve found is that I’m a better employee when you know what this means.”

B. “A written to do list is better for me than verbal instructions.”

As my son talked with employers, he realized that the words “Asperger’s Syndrome/autism/on the autism spectrum” themselves weren’t as important as what he said next. His follow up sentence: “Here’s what you need to know about that ….” was the point in the conversation when the person he was speaking to leaned in and paid close attention.

10. Here’s your “secret weapon”

Explaining scripts are great tools but they’re not enough if your teenager struggles with communication. The ace up your sleeve is that she can bring someone to a work related meeting to “facilitate communication,” for her. This is what’s referred to as a “reasonable accommodation.” (And, we wrote an explaining script for this!)

In the American Disabilities Act (ADA), reasonable accommodations can include “… the provision of qualified readers or interpreters, and other similar accommodations.” An interpreter is that someone who acts as the communications facilitator.

My son successfully engaged the services of a professional facilitator twice. The first time he requested one because his inability to communicate effectively at work was hampering his job performance. This is the explaining script he emailed to the HR manager: “Part of my disability has to do with how communication happens when I’m in a group of two or more people. It’s hard for me to keep track of all the conversations and be able to participate if I have to process everything I’m hearing without help. I would like to bring someone to the upcoming meeting, as an accommodation to my disability, to facilitate communication.” (The language in this script is the outcome of a conversation between an employee of the Mental Health Association and me.) The second time my son needed guidance in conversational support, he asked that same facilitator to attend a meeting with his vocational caseworker.

One day at a time is how my family built our road map. You’ll build yours the same way, maybe even faster using some of my 10 surprising things. Expect detours because detours are the spice of life! Be patient, remembering that this is not a race. Don’t ever settle for the expectations that someone else may have for your son or daughter. Believe that your teenager’s best days as an adult are still to come.

Photo Credit: Jens Schott Knudsen

Are you the parent of a graduating autistic teenager? Share with us your thoughts in the comments section below!
Hensel_PRrKathy H. Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter

 


Rearing Child with Autism Costs Millions


http://www.myfoxhouston.com/story/25766688/rearing-child-with-autism-costs-millions

Posted: Jun 12, 2014 11:05 PM EDTUpdated: Jun 12, 2014 11:05 PM EDT
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"Why do we care about another increase in the numbers of autism? Because each number is a baby. Your baby. My baby. Another family hurting and lost. Another family who will have to fight. Another voice stolen. Another child ravaged by the system. Another child sacrificed for the "greater good". Another mom who will call crying. Another dad who will be devastated. We're all in this together. That's why we care." Holly Bortfeld, TACA's Lead Author 
www.tacanow.org

http://tacanowblog.com/2014/06/13/why-you-should-care-about-autism/

A new study has defined the cost of autism (2.) 
Here is what they had to say:

The parents of children with autism often have to cut back or quit work, and once they reach adulthood, people on the autism spectrum have limited earning potential.

Those income losses, plus the price of services make autism one of the costliest disabilities – adding $2.4 million across the lifespan if the person has intellectual disabilities and $1.4 million if they don’t, according to a new study published in the journal JAMA Pediatrics.

This study is missing all the costs. The costs that parents of families living with autism face are much higher.

-          Applied behavioral analysis therapy (proven to help individuals with autism)

-          Speech therapy

-          Occupational or physical therapy

-          Social skills therapy

-          Educational therapies and support to shore up learning deficits

-          Medical bills

-          Loss of wages

-          Legal fees to fight for services

-          Additional food costs for special diets

-          And more not in this list

There is an average cost of $60,000 per child with autism every year. But this is another study and an estimate. In my experience based on 14 years of TACA parent feedback, I would say that this estimate is low.

These costs do not seem to account for the following:

-          What the school districts cover (which is never enough or per the Individualized Education Program – IEP for short. Read more about what every child in the US in entitled to a free and appropriate education under reference 3.)

-          What health insurance covers

-          What state and federal covers

The costs are higher. In fact, much higher. But here is where taxpayers need to listen up. This is how autism will affect your family:

-          What happens when parents die? The cost to institutionalize an individual is $100,000-$200,000 per year. And please note, individuals with autism typically live as long as other people in society. I also know these costs vary based on the individual and their needs.

-          Special education costs are soaring and have never been fully funded through IDEA (4.) Some of the funds are pushed from regular to special education which are still inadequate to fund services.

-          Legal fees to fight parents in order to not pay for needed services come from your tax dollars. There are no punitive damages for school districts who do not deliver on IEPs and the important services they are supposed to provide. It’s a pay now or pay later penalty.

A great Fox news story covered the reality of the new survey estimating autism costs. The families interviewed agreed that the estimate is too low (5.) I love this news report because it highlights the truth. The realities we should face and the families we should help.

I am missing other costs such as when families need counseling because of the stress they must live with daily. The cost and huge toll on families who divorce. What happens to the other children living with sibling diagnosed with autism? We haven’t even calculated the potential future costs there either.

But there is good news. Before I share the good news, please note that TACA is not a research facility we are a small non-profit with an even smaller annual budget.   From the small sampling of data that we have gathered at TACA over the years, (where we have tracked children diagnosed with autism under the age of 2) if they received early intervention and medical attention unique to their needs, they had a 75% opportunity to have the diagnosed removed by Kindergarten. This is a small sampling of less than 50 families. None the less, the results are impressive. As taxpayers you should want to make that investment early, so these individuals become future taxpayers when you will need help collecting social security later in life. We should and need to invest. Research needs to be placed in this critical area.

The bad news is that the Federal advisory committee appointed by the government designed to find answers for those impacted by autism since 2006, is the Interagency Autism Coordinating Committee (IACC) and their results are heartbreaking. They have been funded $1.6 billion in taxpayer funds and have practically done nothing to help with the autism crisis. We have shared that information many times on this blog. For background, please read so you can see why this group of individuals need to be fired and new resources put in place; resources that truly care to act for the benefit of helping families (6.)

This blog could go on for 10-20 more pages. I am passionate about this cause because I live it and work everyday on behalf of families living with autism. I care. But here’s the deal I need to get you  the non affected tax payer to care. This is a complex issue affecting America’s youth. You need to care. You need to learn more. We need to start caring and acting for a better future of our children. We must care because we cannot afford the future ramifications. The best and the brightest are going to be needed to come up with the right solutions. We must act now.

 

References:

1)      http://www.tacanow.org/family-resources/latest-autism-statistics-2/

2)      http://www.usatoday.com/story/news/nation/2014/06/09/lifetime-costs-autism-spectrum-disorder/10208967/

3)      What is an IEP http://www.ncld.org/students-disabilities/iep-504-plan/what-is-iep

4)      What is IDEA http://nichcy.org/laws/idea

5)      http://www.myfoxhouston.com/story/25766688/rearing-child-with-autism-costs-millions
And TACA Blog http://www.tacanow.org/blog/the-annual-cost-of-autism/

6)      http://tacanowblog.com/2014/05/15/its-time-to-get-serious-about-autism-legislation/