As you are aware, the new regulations have requirements for person-centered planning, which became effective last year on March 17, 2014. The new regulations also describe how waiver settings must be integrated in the community. In the following statement I speak about the idea of fair and equal person centered planning, making sure that all individuals have the opportunity to work within their own communities. My adult son, Kyle, and I are anxious to see how these changes become reality. Kyle is 18 yrs. old now, so we would like to see improvements before he ends his high school career at the age of 21 yrs. old. We believe that giving Adults with Autism immediate funding and fair access to ongoing supports, begins in the transitional years of high school, through graduation, and beyond.
My son's graduation is less than 3 years away. So what do I do BEFORE the "bus" stops coming? My son, Kyle, is currently being failed by the system because his high school teacher’s are preparing him with job and living skills, but he is not getting these in the public sector; the community in which he lives. He needs “real world” experiences in “natural settings”. I see his friends and peers being failed by the system because the level of services drop after high school. Somehow, our kids are falling off of a cliff due to lack of continuity between school service systems and vocational training systems during and after high school. There is a huge barrier when it comes to finding local businesses and employers that are willing to give young adults like Kyle a chance.
Furthermore, while people with Autism may have the skills to perform the job, some are lacking the workplace social skills and resilience to keep the job. The parents of these students in life skills would be thrilled if our older teens could shadow workers, volunteer, or hold a part-time job. We would be absolutely elated if our children came out of high school and into a full-time job. We need someone, something, like OVR or CIS, to help establish positive RELATIONSHIPS with local businesses in the communities where our children reside. Someone to bridge the gap! We also need someone to check in on clients once they get a job in order to keep a job, if the individual needs more training, then the training needs to be there. A “community coordinator”.
I am actively looking into what's not happening during high school and after graduation for many young adults like my son. I am trying to fix things and advocate for/with Kyle, so that he and many individuals like him may have better opportunities in their communities too. Kyle wants to have a purpose NOW. He makes statements about wanting to go to college, wanting his own job, and having his own apartment. Although Kyle can be socially awkward, he likes to go out in public and be around people. Together we are building relationships with the people and places he frequents! We want him to be as independent as he can be safely!
The “I want to work” campaign has caught Kyle’s attention and mine. We think it is an amazing initiative, but the practical questions for wide spread employment in or near our communities are endless: transportation, social skills with strangers/people, work ethic, interest level, job coaching, financial support, etc. As an advocate, I want to “buy in” to the fact that many of our special needs adults can do more than assembly line jobs and can be “competitively employed”. In the “real world”, as a Mom, I worry about Kyle’s safety, and that of adults on the spectrum, on a constant basis. “Have we asked our older teens and adults where they would feel the safest, happiest, and most successful?” We must include them in this conversation!
I am the mother of an 18 years old young man, who has Autism. He has limited verbal skills and considered to be in the middle of the spectrum. I believe that my son, and peers like him, having a developmental delay such as Autism, should be able to utilize existing programs reserved only for individuals with Intellectual Disabilities. I do not believe he needs to meet the criteria of having an intellectual disability, has to get tested on a “bad day”, just to receive valuable and affordable training and have an equal opportunity to be successful in our world. I strongly believe that the ID and ASD communities, along with all disabilities, should be working together to help all of our children thrive. Yes, there are differences, but there are also similarities between all people of all disabilities.
Trying to bridge the gap of many young adults (ages 20 – 24) who have recently transitioned into adult services such as vocational rehabilitation services and Medicaid funded social services is difficult to coordinate due to many issues. One hand doesn’t see what the other hand is doing, or not doing. The adult child’s caregiver finds the system hard to navigate, sends in paperwork, service managers pass the buck, services are shuffled, services are not staffed properly, there isn’t proper funding, and the consumer is left with nothing-no training. Our kids fall through the cracks!
The Bureau of Autism in Pennsylvania must meet the needs within autism support services. The lives of these men and women would positively change and they would ultimately live out meaningful and purposeful lives. So here is a thought: DPW, now called DHS, runs BAS. BAS is what needs to be funded! If BAS is funded, then we can pay for the Office of Vocational Rehabilitation services, or an agency chosen by the consumer and/ or caregiver.
When making your decisions regarding waiver funding, I respectfully request that you think about. ”What happens to young adults with special needs who do not have an Intellectual Disability (ID) label and do not qualify for waiver funding? Men and Women are living with the developmental delay of Autism (ASD).” I know quite a few young adults, not attending school, that do not have a job, and do not have a waiver, living with ASD in Montgomery County, PA. Many young adults with Autism will need ongoing job coaching and supported employment opportunities. Many young adults who have fallen through the cracks and don’t qualify for developmental disability services (usually due to IQ being just above 70) yet they cannot function in the natural work environment without specialized training, ongoing job coaching and ongoing support.
I have been watching the “I Want to Work Campaign from the ARC of Philadelphia and the awesome pictures of our young adults all over Facebook. This has led me to wonder if specialized training can and will happen for Teens and Adults living with Autism while they are attending high school? Waiting until these teens with special needs graduate or leave high school is not working and the existing system is failing them as a whole. Apparently, the Office of Vocational Rehabilitation (OVR) can’t fund young adults until they are out of high school. If transition starts at 14, and OVR is supposed to provide transition services; why not include employment training then too?
My number one concern with the I Want to Work Campaign is, how does he work in a community that may not be sensitive, work for an employer that really doesn’t understand his needs, and work with employees/co-workers that may or may not envy the fact that he has a job that cuts him breaks and they don’t get more than one? How can we help customers to be aware, be more patient and understanding of our special needs employees/workers? So the issue is: how do you get employers to buy into hiring our kids? Can OVR or another agency develop a program that would help them learn how to do this? Here’s a good website of a place that does just that: www.sourceamerica.org
In Conclusion, Adults living with Autism in Pennsylvania need funding now! They need training now! I believe our Governor, Tom Wolf, will expand Medicaid, so that more funding is put into place. Currently there is an interest list for the BAS autism waiver waiting list. There may be 14,000 on the waiting list now, but in two or three years, it will be about 30,000. My son is going to be on that list! There are plenty of twenty-something’s’ sitting at home with their parents right now, wanting to work, wanting to do something, but they can’t always advocate for themselves. Also, important to note, women with autism are an undeserved population, given that 75% of those diagnosed with autism are male. More importantly, individuals with Autism present differently, and not one of them is the same; they are unique and can contribute to our society. These individuals may be fortunate to both parents living at home with them, some come from one-parent households, grandparents raising them, etc. Most caregivers work full-time during the week, and so Transportation becomes very BIG issue, along with scheduling and so forth. The multitude of problems have many, many layers, but there are many, many effective solutions too!
“WE parents (our society) must help our young adults with unique special needs tap into their talents and hidden potential, by exploring opportunities, expanding possibilities, and focusing on high expectations, that set and meet realistic individual goals.” Tara Horwitz
***Attached to this are some solutions and ideas that I believe would make a positive impact here in Pennsylvania, if they had the proper funding behind them.***
Mrs. Tara Horwitz
3002 Joshua Road
Lafayette Hill, PA 19444
Founder of AutismGUARDS.org
Mother of a Young Man with Autism
Advocate and Educator
many good opportunities that can help train young adults while they are in school. There are special overnight camps, weekend trips, social skills clubs’, require money to serve clients that would gain immediate skills and retain these life skills into adulthood.
*some community resources in Pennsylvania promoting the above:
a) Carousel Connections www.carouselconnections.com
b) Summer Matters www.vfes.net
c) Autism Cares Foundation www.autismcaresfoundation.org
d) “Abilities Programming” at the Ambler YMCA (and other Freedom Valley YMCA’s) www.philaymca.org/branches/ambler/ability-programs
Life is like a “head of lettuce”. There are many layers. Some taste sweet and some taste sour. Some are big, some are small. Which pieces will you use to make your salad? -author unknown
Immediate Actions needed NOW:
1) Funding (everything can be done with money)
2) Community HUB (educational resource center-maybe a library?)
3) Relationship Building in Communities (community coordinator helps high school students connect with local businesses)
4) Training (the entire community needs training; specifically, businesses need to learn about the benefits of employing individuals with differences, including special individuals in town)
5) Safety (see www.aaware.org)
6) Community companions (when an individual needs support going in the community with a little support to help with social boundaries, safety, social awkwardness, purchasing items at grocery store, banking, getting a haircut, going to the doctor, etc.)
7) Transportation (can the individual learn to use public transportation? Can the individual use Transnet? Private car service? CCTC? Shuttle system? Can the individual get transportation at night or on the weekends?
8) Public Transparency (getting individuals out into the community on a regular basis)
9) Training on-site- starting in high school- Vocational Tech schools, Internships, Job training, volunteering, etc.
10) College (Temple University has started a very good program for individuals with Intellectual Disabilities, if a waiver for Autism is reinstated, they will accept individuals with Autism as well.)
11) Working independently (job coaches for ongoing support in the work place; OVR and CIS agencies can help individuals with the pursuit of “I WANT TO WORK.”
12) Independent Living Models (be open-minded and creative to different housing options-ask what consumers want and why they want it-help them to attain an appropriate setting)