Congress!

AutismGuards :  Guardians United to Advocate Resources and the Development of Supports
*My personal letter to the Governor of Pennsylvainia:  

 

September 26, 2016

Governor Tom Wolf

Office of the Governor

508 Main Capital Building

Harrisburg, PA 17120

Dear Governor Wolf,

I am the mother of Kyle Hayse, a 20 yrs. young man, who has Autism. He has limited verbal skills and considered to be in the middle of the spectrum. Kyle has many strengths and talents that make him one in a million. He enjoys drawing, mostly in black ink, but when he uses Photo Shop he uses brilliant colors.  Kyle’s interested in Anime, Star Wars, Harry Potter, Lord of the Rings, and many other really cool popular entertainment.  He is a friendly young man with a great sense of humor. There are moments when Kyle really opens up and communicates about his most favorite things.  There are also moments when he is totally frustrated and expresses it in an unexpected way.  Those are the times when we are reminded about how Autism has deeply impacted him and our family.

In order to help Kyle, and others like him here in Montgomery County PA, I started an advocacy group known as Autism Guards. Children with autism become adults with autism and the numbers needing assistance aren’t going away. As Kyle’s advocate, it is my mission to help him transition to adulthood.  Waiver funding could open so many more possibilities for independent living. I have an active website devoted to transitioning of young adults with ASD, I blog, and post on Facebook.   My son, Kyle, means the world to me! He is about to graduate next year, in 2017. I’ve been doing everything in my power to make certain he does not graduate to the couch, nor to his bedroom. I have actively advocated for supports for my loved one. Many of the supports don't require waiver funds at all! I have tapped into community resources, such as my local library and parks and recreation.  Unfortunately, these free resources only go so far.  A successful future for this soon to be 21 years old man will require waiver funding.

Hearing that waiver funding here in Pennsylvania is in jeopardy, again, is always upsetting.  For my family, we are praying and hoping that the Autism Waiver gets the needed funding, so that we can help those like my adult son, that do not have an IQ to identify them as having an Intellectual Disability.  Giving Adults with Autism immediate funding and fair access to ongoing supports, begins now, with you.

I believe that my son, should be able to utilize existing programs and waivers reserved only for individuals with Intellectual Disabilities. 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.  If we look closely at an individuals’ functioning skills, we see the biggest similarities. Maybe we should have one waiver?  Let’s call our new waiver, “The PA Functional Waiver”.  

Giving waiver funds to recent high school graduates is imperative. This funding crisis will affect the students graduating in June 2017. It will affect my son! We can't allow our friends and family members to lose their educational entitlement and graduate to NO SUPPORTS. The younger, graduating population is finishing high school with good work and independent living skills that are based in their own communities. My son Kyle is one of them.  Our schools are finally giving them job training and better opportunities to go on to post-secondary education. If our state gives someone who has previous experience working, or being successful in academia, a waiver, they will thrive and have a greater chance at living in their own home successfully. They will use less waiver money and be less of a “burden on the state”.   They will be independent adults.

We have been told recently that the Office of Developmental Programs (ODP) eliminated the funds! I believe, we need to start somewhere different to end the waiting list here in Pennsylvania. Unfortunately, there is no such thing as fair. Please consider this: 1 Waiver at a 30,000 cap per year can help one 35 yrs. old adult living with special needs, who has been out of school for years, is not working, sits at home and is not really active in their community. This is unfortunate and the reality for many.  Or, we can choose to help two young adults, recently out of high school, whom are already living and working in their communities.  Each one of them would only use up 15,000 cap per year.  Looking at how money is budgeted and used for less supports.  How can we open up more slots?  What if 4 individuals could be helped at the same amount?

I believe that ODP must consider who will have the best rate of success with waiver funding? If someone has been sitting at home, will they adapt to a work environment in a similar way as the graduate in their early 20’s? Who needs less supports? Who is, less of a burden, on the state? I would even go further to point out key factors such as family involvement. Is the family advocating on behalf of the individual, making meaningful schedules, driving this person to appointments, really participating in this individual’s life?  Waiver funding goes further and is truly more successful when family supports are being used. As a tax payer and resident of Pennsylvania, it is my wish to see the waiver funding help the most number of citizens as possible.

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. But with waiver funding, impossibilities become realities and even greater opportunities. 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. Our kids fall through the cracks!  My son's graduation is less than a year away. So what do I do BEFORE the "bus" stops coming? Kyle is finally receiving “real world” experiences in “natural settings”. His school district approved getting him a job coach and doing travel training on Septa, as a part of his community based training, through Community Integrated Services.  (This is a service typically funded after 21 yrs. of age through waiver funding, for those lucky enough to get it.)  Kyle is doing amazing things at his job sights and he is gaining self-confidence and skills.  He has pep in his steps!

Governor Wolf, Kyle wants to have a purpose NOW. He wants to work after he graduates.  Kyle eventually wants to live in his own apartment.  He often talks about owning a dog and having a girlfriend.  His dreams are the same of most men his age.  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!  

Disabilities are hard on the individual, as well as the family.  For our family, and for many others, when we hit a milestone we are overcome with joy.  When we have difficult times, we can be filled with sadness. Autism is not a death sentence, but it can be very isolating and lonely for the individual and their family. What does Kyle’s future hold? Can my son, Kyle, be gainfully employed after graduation?  What if the appropriate supports are not there?  What will happen when we die?  These are the realities of many individuals with needs that do not go away. 

 Governor Wolf, please help us.  Please help Kyle and countless others.

 Sincerely,

Mrs. Tara Horwitz   (Mother, Advocate, Educator)
Founder of AutismGUARDS.org

 

 

 

 

 

 

 

 

 

 

 

***Here are some solutions and ideas that I believe would make a positive impact here in Pennsylvania, if they had the proper funding behind them.*** 

 

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)                                                           There are precautions and safeguards that we can all put in place!

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) 

 

“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.”.

Mrs. Tara Horwitz   (Mother, Advocate, Educator)
Founder of AutismGUARDS.org    


Breaking news: 9/17/16-

Waiting List Funding in Serious Jeopardy 
Your Calls Needed Immediately

We have been informed that the funding for 700 young adults graduating from high school in June 2016 and the 250 Emergency Consolidated waivers have been eliminated from the Office of Developmental Programs. Despite the fact that your legislators appropriated funds in the state budget for funding Graduates and those on the Emergency List. The reason given by the Office of Developmental Programs is that it has been underfunded for years and they need the designated waiting list funding for existing people and programs. This will throw the Waiting List initiative back two years and increase the number of those waiting by 2000.

There was an $80 million dollar increase in the Final State Budget. Why would DHS and ODP need to eliminate Waiting List money?

Please call the following numbers on Monday morning from 9:00 AM to Noon.

Governor Tom Wolf: 1-717-787-2500

Senator Pat Browne: 1-717-787-1349

Representative William Adolph: 1-717-787-1248

Call Your own PA State Legislator and Senator

Here's what you need to say:

*. Hello my name is
*. I live in (County)
* Ask: What happened to the funding for the waiting list for people with Intellectual Disabilities

Thank you

Please pick up the phone and take a few minutes to call! We have all worked so hard. Last year we visited over 70 legislators and the Governor to get the help people need so they can live an "Everyday Life."

Please stand up and make your voice and our voice heard!



12/14/15---
PA DHS- PURPOSE:To announce that the Office of Developmental Programs, Bureau of Autism Services is making available for public review and comment from December 5, 2015 through January 11, 2016, the proposed renewal to the Adult Autism Waiver

Department of Human Services, Office of Developmental Programs, Bureau of Autism Services,

Attn: Lea Sheffield, 625 Forster Street, Room 605, Harrisburg, PA 17120

12/14/15

Dear Ms. Sheffield,

My adult son, Kyle, is 19 years old and in his senior year of high school now, soon to go on to his Super Senior year and graduate.  I have been very vocal and have taken actions to create an inclusive community for him and his young adult peers to thrive.  We still need your help! 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. I originally wrote to you last February with ideas and solutions to be encompassed in the Adult Autism Waiver.  (Please see below).  I have also commented on every line of the proposal for the renewal of the Autism Waiver. (Although my son does not currently recieve the waiver, nor do many of his friends living with ASD, I feel compelled to speak up and have my voice heard.  I may not understand all of the symantics of the waiver, as I do not have a packet in front of me, nor do I have a legal degree, but I have taken the time to read and comment on what I have easily at my disposal.)  The biggest change I would like to see is that every person with ASD/ID/DD be given a waiver.  Let's call it "THE FUNCTIONAL SKILLS WAIVER".  Yes, all 15,000 of them.  On a sliding scale, funding only what that particular individual needs on a yearl to year basis.  Can we get it to be fair?  Can we limit funds?  I would also like to see the consumer/individual decide what their individual waiver is used for, especially schooling, therapy, and housing. 
Thank you for your time and I look forward to your response.
Sincerely,

Tara Horwitz

www.autismguards.org

The Adult Autism Waiver should help fund most of the items below, if not all of them:

1) Funding (everything can be done with money; example: Kathleen Kane's $2M "investigation", if the PA government has money for this, surely they have money to help their citizens.)

2) Community HUB (educational resource center/ place to congregate and have recreational leisure time....maybe a library? There is a critical need for these if we want our adults to work and live in their own communities.)

3) Relationship Building in Communities (community coordinator helps high school students connect with local businesses; without this link, our young adults will not become gainfully employed right out of school.)

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 (
awaare.nationalautismassociation.org ...give the Red Tool Box directly to parents through doctor's offices at time of concern/diagnosis of young child...continue to talk about this with Adult Children that may be at risk for wandering.  Similar to wandering behaviors in the Alzheimer’s community, wandering and elopement behaviors in children and adults with autism have led to countless tragedies across the country.)


6) Community companions/mentors (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; parents can do this with helpful hands and resources)

9) Life skills 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, and they are an approved provider, 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) 


In the request for a renewal of the Adult Autism Waiver, the Department proposes to revise the Adult Autism Waiver as follows:
* Update terminology used throughout the Adult Autism Waiver
Are we finally getting rid of the line in the sand between ID and ASD? Are we finally collapsing the waiver into one FUNCTIONAL SKILLS WAIVER?

* Revise several quality measures and reporting requirementsIf you are talking about OVR, they are failing our young adults and want nothing to do with certain young adults who cannot independently work on their own for long periods of time. SOme of our guys and gals need more than 90 days of training.) and reporting requirements (you need less paper work and more hands on training)

* Increase the limitation on the number of participants served at any point in time from 518 to 568 and increase the number of unduplicated participants from 544 to 596(are you/they serious? There are currently almost 15,000 adults waiting to be on the “waiting list” for the waiver,or something like that, I get so confused with the "list" and the "wait list".)

*
* Add reserved capacity for ten individuals discharged from a state hospital and for three individuals transferring from the Adult Community Autism Program  (10 individuals?, we can’t do better than that?!!!)

* Allow use of an interim service plan when an individual has a protective services plan that specifies a need for long-term support and is enrolled in the Adult Autism Waiver using reserved capacity (I guess this is good.)

* Revise the intake process for individuals 18 years of age or older but under 21 years of age(for what purpose? To go onto a “waiting list”? or actually get funding so that they can get appropriate services, training, etc. If you are talking about the OVR early reach program, that is only to create a list of who they expect to want their services after graduation.)

* Revise provider qualifications-(YES!  Insurance provider-please stop making it so difficult for providers to accept medical assistance to help individuals. So many music therapists, psychologists, speech pathlogists, and social skills centers can’t accept MA bc it takes up to 3 years to apply and jump through hoops to get insurance approval. SO many individuals would benefit on utilizing services that are currently not covered by MA. Please change this and pay therapists an appropriate sum for their services.)

* Remove occupational therapy as a service(why are you removing this? OT helps so many individuals, especially young children. Is this covered through some other kind of service?)

* Combine some services into new services (?)

* Revise the risk assessment and mitigation section (focus on helping individuals live independently?)

* Revise some performance measures(parental input concerning any provider and/or agency; consumer input and ratings?)

* Add performance measures to meet new Financial Accountability sub-assurances(? I guess this is good? will it create more waivers?  fair funding?  sliding scales?  yearly reviews?  functional needs based???)




10/13/2015                                                                (page 1 of 4)             

Dear Nancy Thaler, Deputy Secretary of ODP, 
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 19 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. 
 
I am the mother of a 19 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.
 
My son's graduation is less than 2 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 teachers 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.
 
  (page 2 of 3)
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 is bored with regular school classes and wants to actively work in the community.  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!  
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 and advocating for it, 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/supported employment opportunities. Many young adults who have fallen through the cracks and don’t qualify for developmental disability services (usually due to IQ) yet they cannot function in the natural work environment without specialized training, ongoing job coaching and ongoing support.
                                                                                                                                   
(page 3 of 4)
What happens to a young adult who may not be able to be competitively employed or live all by themselves?  What happens to a family that secured a waiver for their adult child, but the workers that they have retained from an agency aren’t showing up for work?  What if everything you help your child put into place does not work out?  For our family, and for many others, it seems like every good milestone or moment earned by Kyle, is overshadowed with a negative behavior, which sets us a few steps back. Special needs are hard on the individual, as well as the family.  Kyle has talents, and Autism is not a death sentence, but it can be very isolating and lonely for the individual and their family. Kyle can become oppositional and aggressive with his tone and words. Can he be gainfully employed after graduation?  What if the appropriate supports are not there?  These are the realities of many individuals with needs that do not go away. 
 
I want to point out that I am in favor of sheltered workshops, residential living spaces/farmsteads, and any living situation that is the least restrictive for the individual in need.  I am not sure if BAS/ODP is really listening to individuals about their desire to live their lives happily and productively in shared community places.  Competitive employment is a great achievement, but we all must remember that not every person will be able to hold a position in a paid position.  It is the reality now. We all hope to change and improve this, but we need to think about what is, and deal with the existing options.
 
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. 

“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 H.

 
***Attached are some solutions and ideas that I believe would make a positive impact here in Pennsylvania, if they had the proper funding behind them.*** 
Sincerely,
Mrs. Tara Horwitz   (Mother,Advocate, Educator)

Founder of AutismGUARDS.org    

                                                                                                    (page 4 of 4)
***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)There are precautions and safeguards that we can all put in place!
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) 
*the above ideas were created as a guide to help find and create solutions
Mrs. Tara Horwitz  
Founder of AutismGUARDS.org (Mother,Advocate, Educator)



9/12/15*****Revised thoughts about how WAIVERS can and should be easily funded.  As I continue to educate and advocate for WAIVER FUNDING for our adults with intellectual and developmental disabilities and autism, I am noticing errors in budgeting.  Fair and immediate funding that is *equitably distributed* to ALL those on the emergency and waiting list. (easier said than done, I know, but right now there are only 50 slots approved).  The PA budget is currently vetoed.  Maybe we could open up more slots if we truly looked at living expenses and how Medical Assistance and SSA/SSI play a role for each individual.  Maybe some of our special individuals work and only need 15,000 per year to maintian a good quality of life?  Maybe some need 30,000 per year, bc they have a multitude of needs?  Small, medium, and large amounts of funding could go a longer way and help many more of our individuals with ID/DD and Autism. By looking closely at how monies are distiibuted, then we can free up more slots and help more people in need!

 

 

2-1-15  A PUBLIC COMMENT by Tara Horwitz  
Giving Adults with Autism Immediate Funding and Fair Access to Ongoing Supports

Adult Autism Waiver, comments can be submitted to Lea Sheffield, 

Department of Human Services, Office of Developmental Programs, 

Bureau of Autism Services, 625 Forster Street, Room 605, Harrisburg, PA 17120

Dear Ms. Lea Sheffield,

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 2 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 email are some solutions and ideas that I believe would make a positive impact here in Pennsylvania, if they had the proper funding behind them.***

Sincerely,
Mrs. Tara Horwitz
3002 Joshua Road
Lafayette Hill, PA 19444

Founder of AutismGUARDS.org
Mother of a Young Man with Autism
Advocate and Educator
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***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) 

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Attn:  Chava Kintisch, Esquire

Director of Civic and Government Affairs
Disability Rights Network of Pennsylvania
ckintisch@drnpa.org
(215) 238-8070, extension 210
www.drnpa.org
Offices in Harrisburg, Philadelphia, and Pittsburgh

December 9, 2014

Dear Chava Kintisch,

I am writing you to address a few concerns I have regarding supporting Adults with Autism here in Pennsylvania.  I am submitting this email to you, and your organization, as my a public comment for the Department of Human Services' revised transition plan for all waivers. I think my statements will add valuable thought to help clarification on anticipated benchmarks and time frames for funding to be dispersed to Adults with Autism. As you are aware, the new regulations have requirements for person-centered planning, which became effective earlier this 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 and 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.  When his bus stops, we want him to have many opportunities as a result of these initiatives.  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. 

I reside in Montgomery County, PA. I am the Mother of an Adult diagnosed with Autism. I was unable to attend the Disability Rights Network's last forum in Chester County, PA. The following letter, is a letter that I sent to the DRN back in Nov. 2014. It is a letter that I have also sent to many other agencies, stakeholders, politicians, and anyone working in or for the state of Pennsylvania that will help to create positive changes for our young adults with ASD. It in no way is meant to offend or discredit individuals with other "abilities" or "diagnosis". I am choosing this topic as it relates to my adult son, Kyle. The same way I chose my networking groups' name of AutismGUARDS. Although my primary focus is on Autism, I enjoy working with and talking to everyone in our community. Helping the special needs community is my passion. Inclusion is key to helping society at large. I truly believe that all special needs should and can be funded and that every person who needs help should receive help. This platform has chosen me. So, here it goes....

To Whom It May Concern,
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 work environment without specialized training, ongoing job coaching and ongoing support.

I am the mother of an 18 years old young man, who has Autism. He is verbal and considered to be in the middle of the spectrum. I believe that my son, and other peers like him, having a developmental delay such as Autism, should still be able to utilize existing programs reserved only for individuals with ID. 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, but we still need coordination. How can OVR and BAS work together?

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 son, Kyle, is being failed by the system because his school is preparing him with job and living skills, but he is not getting “real world” experience in the “real world”. 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 after high school. Kyle has not been assigned to OVR yet. We are interested in meeting with OVR and seeing what they have to offer in helping Kyle to build job skills that he does not possess a real work place environment. 

There is a huge barrier when it comes to finding local businesses and employers that are willing to give kids like Kyle a chance, even if only visiting to see what a job is like for the day. Very few businesses, both large and small, make any effort to hire people with autism spectrum disorders and other developmental disabilities. Furthermore, while people with Autism may have the skills to perform the job, they 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 helping to 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.

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!


My number one issue with the I Want to Work Campaign is, my guy Kyle wants to work, but 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? Etc. Here’s a good website of a place that does just that:http://www.sourceamerica.org/

In Conclusion, Adults living with Autism in Pennsylvania need funding now! They need training now! Hopefully, the New Govenor Elect, 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! How do WE COME TOGETHER to keep and set goals with high expectations that keep in mind realistic outcomes and have practical implications?

“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

Sincerely,
Mrs. Tara Horwitz
3002 Joshua Road
Lafayette Hill, PA 19444

Founder of AutismGUARDS.org
Mother of a Young Man with Autism
Advocate and Educator

 
 

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