When the School Bus Stops Coming: the dilemma for adults with autism

Dr. David L. HolmesChairman/Ceo Lifespan Services, LLC

Autism 1 RadioTalkshow Host: Adults on the Autism Spectrum Today!

What happens after the entitlement years? Years of eligibility but no

services.

“Kids have been getting $60,000 a year minimum worth of school services. Then it's gone," said Leslie Long, policy director for the nonprofit agency and an adult task force member. "A percentage will go on to college. The majority can't be home alone."

About 80 percent of adults with autism live with their families, Keating said, in part because of a shortage independent living options.

"It's a big shock to the system when they graduate," Smetona, mother of Michael and Megan, said. "Their schooling was everything to them. It met their social and extracurricular needs. It's hard to find something in the community for Michael and Megan to do."

providers are struggling to meet a rising need for day programs, out-of-home residential placements, and in-home support services

What happens when services are unavailable or underavailable?

Willing, Able -- and UnemployableBy Ann BauerMonday, October 30, 2006; Page A17 My 18-year-old son shambles. There's no other word for it. He walks like an old man: scraping the soles of his feet on the floor, tilting his head one side and tucking it into the space between his neck and shoulder.

Today, what I fret about most is the fact that after two years of submitting applications, taking tests and going in for interviews, he cannot get a job.

I took Andrew to Target, a company known for its history of working with disabled people. Only there's a catch: I was told when I called that their policy was to employ "visibly handicapped" workers. People in wheelchairs qualify, as do those with Down syndrome. My son, with his eccentricities and halting speech, does not.

My son is one of many: Some time in the next decade, the Autism Society of America estimates, the number of people in this country who have autism will hit 4 million. I wonder if, when these children reach the age of 18, they too will be unemployable. Or if, perhaps, the work we're doing with Andrew now will mean a different experience for those who follow.

THE FUTURE DEPENDS ON WHAT WE DO IN THE PRESENT

MAHATMA GHANDI

What can we do to ensure that the future is brighter for adults with

autism

Change the name of the agency responsible for autism

• Petition the state legislature to rename your state’s Dept./Div. of Mental Retardation to

• The Dept./Div. of Developmental Disabilities

• If not this is what will occur

"Last year, the state set aside $250,000 to hire a coordinator of autism services within the Department of Mental Retardation. But under state law, the department can serve only people with IQs lower than 70, meaning that the agency would have to change its name and its mission to incorporate services for high-functioning people with autism.“ Connecticut

Get a copy of your state’s Medicaid Waiver application. Read it .

Contact your state representatives; legislators and governmental workers.

Tell them of your concerns regarding the application.

Stay vigilant and persistent.

Don’t merely advocate…AGITATE!

What you or your offspring are eligible for under state and federal guidelines

(Updated: March 17, 2009 at 6:10 PM CT)

Recently we brought you Scoop Essentials: Transition, It’s A Brave New World,

a conversation about preparing for adult life with transition specialist Mary Korpi in Long Island, N.Y..Mary Korpi: The Department of Rehabilitation is both federal and state funded so there will be different levels of support in different parts of the country.  Nevertheless there are specific guidelines families can follow that will maximize a young adult’s access to services.

For the specific responsibilities of the Vocational Rehabilitation Administration get the book:

Rehabilitation of Individuals with Autism Spectrum Disorders [2007] www.gwu.edu/~crcre

1. First, at age 18 apply for SSI from Social Security. At 18 only the young adult’s income is included when determining eligibility so families need to be sure to research the income guidelines and, if needed, set up a “Supplemental/Special Needs Trust” if the individual has too many assets. A lawyer who is versed in elder care law is most likely familiar with this type of trust but get referrals from local adult service agencies that deal with these issues regularly.

2. In many states once the young adult gets SSI, they will automatically get Medicaid. However, in Illinois, for example, you must apply for Medicaid separately so you will want to do that as well. You need to indicate that you want full coverage Medicaid, not just for medical needs. In many cases Medicaid will pay for adult services when an eligible young adult leaves school.

3. As soon as the young adult gets Medicaid, apply for a “service coordinator” through the Office of Developmental Disabilities in your state. Service coordinators are the “navigators” of adult programming for families and people with disabilities.

4. Apply to have your child onwhatever ‘waiting lists’ your statehas for its’ developmentally disabledcitizens

5. Finally, do not leave school before you must. If you have not completed the requirements for graduation, you are entitled to stay in school until the year you turn 21! For all the struggles you may face within the school system, school services are mandated by law. Adult programs require meeting eligibility requirements, which often makes services far less comprehensive and user friendly.

The Forensic side

Autistic hacker escapes penaltyWaikato Times | Tuesday, 15 July 2008http://www.stuff.co.nz/stuff/4619215a28.htmlA Whitianga teenager who hacked into a computer at a United States university was today discharged without conviction at the High Court in Hamilton

The U.S. government says McKinnon carried out the biggest military computer hacking of all time, accessing 97 computers from his home in London starting in March 2001 and costing the government about $1 million.McKinnon, currently free on bail in England, has said he was simply doing research to find out whether the U.S. government was covering up the existence of UFOs.

Dr. Arturo Silva, of San Jose, Calif., is in the middle of a study of 50 of the nation's most prolific killers. He says he has spotted something intriguing: autism.Not in all, he says, but some. And many of the others are borderline.Silva says he finds two distinct groups - those who are withdrawn and disorganized, with longstanding social problems, like Henry Lee Lucas…

Cho, a senior English major at Virginia Tech, had been diagnosed with and was treated for a severe anxiety disorder in middle school and continued receiving therapy and special education support until his junior year of high school. While in college in 2005, Cho had been accused of stalking two female students and was declared mentally ill by a Virginia special justice.[3] At least one professor had asked him to seek counseling.

Joe, 34 years old, was married with children, has Asperger’s,currently facing charges of viewing and cataloging childpornography

Lou, 44 years old, successful book store owner, has Asperger’s, currently incarcerated in a state penitentiary for sexual offenders

Charlie, 19 years old, nonverbal, significant autism, currently in a moderate secure lock up unit in a DD Center for sexual offenders.

A 20-year-old autistic man, accused of stabbing his mother twice in the back last Monday, will now enter a legal system that some argue isn't properly equipped to handle someone with his disorder.

What to do

a. Ensure proper diagnosis

b. Begin treatment and supports immediately

c. Do not allow viewing of violent DVDs, games, or movies

d. Do not allow viewing of pornography

a. Train compliance to socially adaptive rules

b. Redirect interests/behavior towards consumable matters

c. Do not view aggressive, oppositional or destructive behavior as anything less than assault/battery, defiance, and/or property desecration

d. Script appropriate behavior!!

Stop the bullying/taunting/discounting

• mikep52 said: Well my son is a Senior in High School now and he has been bullied, beaten, spit on, verbally abused since middle school. He is high functioning Autistic. The school system always blames him and his actions rather than do something to the bullies. It is easier to deal with one child than the many that do the abusing. He was even accused of having a hit list after the Virgina Tech shootings. Our life was hell for 2 weeks. Of course it was proven that he did not and did nothing to provoke the accusations. We never even got an apology from the school.

Above all; Plan!

MODEL TRANSITION PLANDate:DIRECTIONS: To be completed by parent/guardian with support from staff who are assisting the family with the Transition Process. Name of Student

Date of BirthParent/Guardian

Telephone NumberStreet AddressCity State

Zip Code

E-Mail AddressSchool DistrictCase Manager

Telephone NumberCurrent ProgramContact PersonTelephone NumberService CoordinatorTelephone Number

GENERAL INFORMATION - Please summarize below:1. Significant birth history:2. Diagnosis or presenting issues:3. Medical or neurological information:4. Special or health-related information:5. Other/medications:6. Describe the student’s program and progress with a focus on strategies that have been most successful (e.g., successful strategies, current services, adaptations, accommodations, training of support personnel and professionals, etc.):7. Family's priorities approaching transition to next level of service; eg, Early Intervention to Preschool Disabled Services; Adolescence to Adulthood:8. Expectations for next level of education:9. Expectations for recreational/leisure activities:10. Expectations for behavioral health/healthcare:11. Expectations for transportation:12. Expectations for social skill enhancement:13. Expectations for social support groups (e.g. family, friends, groups, etc.)14. Expectations for communication skill development:

15. Expectations for sexual expression:16. Nutritional requirements:17. Physical/cardio-vascular expectations:18. Spiritual life expectations:19. Guardianship:20. Financial planning:21. Health and life benefits (e.g. living wills, health insurance, life insurance, funeral expenses, etc.)22. Service agency profile (e.g. the types of services or agency(s) required to offer such services)Prepared by: __________________________________Date: _________________Parents/Guardians: _________________________________Date: ____________________