Gerard Jimenez believes it’s never too early to plan for the future. “I subscribe to the philosophy of ‘begin with the end in mind,’” says Jimenez, whose 17-year-old daughter Sofia has Down syndrome.
“When Sofia was in first grade, we painted a picture at one of our educational planning meetings of where we saw Sofia once she leaves the public school system: going to college, living as independently as possible, working in the community and/or owning her own business,” the Austin dad says. “We asked, ‘Knowing where we want Sofia to be in the future, what do we need to do now?’”
Because raising a child with special needs varies significantly depending on the extent of the disability, there is no one-size-fits-all approach to preparing for college. Admittedly, it can be difficult to even know where to start. Some parents seek out high school-to-college transition programs, others go the vocational or life-skills training route and still others may try several types of programs before finding the perfect fit. But no matter what goals you have for your child, researching your options early is paramount.
Jimenez says one problem many parents face early in their child’s education stems from students being placed into programs only for children with disabilities, where the curriculum focuses mostly on independent living and vocational skills rather than academics.
To combat this problem, Jimenez helped launch the Texas Consortium for Post Secondary Opportunities for People with Intellectual and Developmental Disabilities (IDDs) late last year. The group forges innovative college programs across the state for students with IDDs, while raising awareness of the need to increase these opportunities.
“Do not set boundaries for your children. […] Every student, disabled or not, needs a good education.”
“There are over 200 college programs for people with IDDs across the country. In Texas we have less than half a dozen, so we’re clearly behind the curve,” Jimenez says, noting that the Consortium successfully led the effort to launch courses at the University of Texas.
Of the six programs available in Texas, there are none in the Dallas-Fort Worth area. To help push for more programs, the Consortium will hold a community forum on October 21 at the Region 10 Education Service Center in Richardson to present information on their plans to promote expansion of existing post-secondary programs and creation of new ones in Texas. Participants will hear how other large cities are working with universities to include individuals with intellectual disabilities at the college level.
According to Jimenez, the biggest challenge for parents is ensuring their child has access to a rigorous curriculum and to general education classes. “The goal is to continue their education, keep them engaged in the community, help them continue their independent living skills and also develop job skills that will lead to meaningful, gainful employment,” he says.
But where to start? Jimenez suggests a visit to thinkcollege.net, a user-friendly directory. “Just click on a state, and every college program they know of pops up.”
Navigating the System
Chances are if you have a teen with special needs, you’ve worked with school personnel every year to coordinate all the necessary accommodations consistent with his Individualized Education Plan (IEP). But as Austin mom Gail Dalrymple discovered, figuring out your child’s next step after high school, and then preparing him for it, can be overwhelming.
“I was an attorney for 30 years, plus I had financial resources and connections in the special needs community, and still, creating an adult life for my son was the hardest thing I’ve ever done,” says Dalrymple, a mother of four whose 27-year-old son Peter is legally blind, profoundly deaf and on the autism spectrum.
“When Peter first got out of an applied program in high school, he went to live in a contained community for individuals with cognitive impairment,” she recalls. “They had classes every day — everything from hygiene to archery to geography — and he loved continuing education. So after that program, I scrambled for ways to fill his days and find meaningful activity for him.”
In her research, Dalrymple discovered federally funded classes through ARCIL (A Resource Center for Independent Living), a private nonprofit corporation in Austin — one of nearly 30 such resources in Texas — that seemed like a perfect fit.
“We were advised to start Peter in the class that we felt he would have the highest chance of success in, something he already knows,” she says. “We put him in social skills in the workplace; he did really well and was very eager to sign up for more. It gave Peter an opportunity to learn and meet peers — the things that totally disappear when our kids graduate from high school or a similar program.”
Today, Peter attends the STEPS (Skills, Training and Education for Personal Success) program at Austin Community College (unfortunately, there are no programs available locally), which offers a separate stream of courses for people with cognitive impairment.
Getting the Right Support
Al and Martha Siegel encouraged their son David, who has Asperger’s, to go to college. “My husband and I decided that our son will have the same opportunities as any other young adult,” the Arlington mom says, adding that following graduation, they searched for a college that provided good counselors and help with social skills in addition to academic training.
“Al coordinated activities and meetings with the colleges’ academic departments and counselors, while I provided support by calming David down when he felt overwhelmed. We found excellent help through Project CASE at Texas Tech,” she shares.
Project CASE (Connections for Academic Success and Employment), a high school-to-college transition program, helps students ages 18–25 with developmental disabilities to earn an academic degree or technical certification, as well as seek employment.
According to project director Dr. DeAnn Lechtenberger, director of Technical Assistance and Community Outreach at the Burkhart Center for Autism Education and Research at Texas Tech University in Lubbock, the project, currently in its third of a five-year grant from the Texas Council for Developmental Disabilities, serves about 20 students statewide each year.
Student accepted into the program are assigned to a Learning Specialist to help them navigate college life. “Our Learning Specialists work closely with the campus Student Disabilities Services Office to put together an individualized plan to help students with autism and other developmental disabilities to problem-solve academic, employment and social challenges,” Lechtenberger explains.
Lechtenberger recognizes that the social aspect of college is challenging for most freshmen, from getting along with roommates to making friends and connecting to the university environment as a whole. That’s why many colleges have active Campus Life programs that include free movies, lectures, clubs and other social events. Texas Tech’s Connect to Tech group organizes bi-monthly sporting events where students with and without disabilities can interact.
To prepare David for this important step in his life, the Siegels helped him study and worked with him on learning to become more independent. “David knows he needs a good education; he liked Tech and was ready emotionally for life on campus,” says Al Siegel. “David calls every day and when he has problems with classes or social skills, we share and try to resolve problems together.”
David takes 12 credits each semester and, according to Martha Siegel, has received much-needed emotional support from the CASE staff.
“David needed help on what to do in case of bad weather, emergencies or running out of toilet paper,” Martha Siegel says. “He also wanted to start dating but didn’t know what to do. DeAnn’s team provided informal guidelines about appropriate behaviors on campus and David knows that he can always call DeAnn or her colleagues for help.”
Every day David meets with a tutor, and the Project CASE team keeps a detailed log of his academic and social progress. “They also set up expectations and back-up plans for the students. David was encouraged to drive and recently obtained his permit. Now he looks forward to driving himself to the movies,” Al Siegel adds. “David wants to work and take care of himself after graduating from college.”
Knowledge is Power
Middle school is an ideal time to begin examining your options, according to Rebecca Tuerk, director of Student Disability Resources and Services at Texas A&M University-Commerce.
During 8th-grade year, a high-school degree plan is determined for a student with special needs. “But in Texas, only students who currently graduate on the ‘recommended plan’ have the opportunity to qualify to enter a four-year university immediately after graduation,” explains Tuerk.
Students who graduate on a ‘minimum plan’ can enter the community college system, which is why it’s important that your child’s high-school courses are chosen carefully to ensure the opportunity of attending a four-year institution upon graduation. Ask your child’s counselor or transition specialist to provide guidance, so they stay on the right path to reach their educational and career goals.
Tuerk also suggests that parents steer their children toward independence in high school by involving them in their own Admission, Review and Dismissal (ARD) and 504 meetings.
“Once students enter the post-secondary environment, they become responsible for themselves and little if any information is provided to parents,” she explains.
Parents and students should work closely with guidance counselors, transition specialists and outside resources, such as the Department of Assistive and Rehabilitative Services (DARS) to put a post-secondary education plan in place.
And don’t be afraid to ask lots of questions if you’re unclear about transition or post-secondary options, insists Sandye Cox, the transition consultant at Region 10 Education Service Center in Richardson. The Center coordinates resources, offers technical assistance, and provides staff development related to secondary education and transition for youth with disabilities to create opportunities for successful futures.
“For students choosing to attend college after graduation, contact the Special Services Office at the campus as you plan your college visits. Students who have received special education accommodations at the high-school level may be eligible for services at the college level,” says Cox.
Cindy Roden’s twins Garret and Gordon, 22, have Asperger’s and are also legally blind, but they always intended to go to college. Roden consulted the Office for Students with Disabilities (OSD) at a local college, where the counselor discussed entrance exams, accommodations, areas of interest and orientation and mobility.
“They’ve always loved computers, so we found classes that interested them, not really limiting them to a major,” the Austin mom says. Each semester, Garret and Gordon visit the OSD to take their exams, receiving extended time and large print copies when needed, along with assistance from fellow students taking notes during class.
Taking Steps Toward Independence
Eighty-eight percent of colleges currently enroll students with disabilities, according to 2011 data released by the U.S. Department of Education. Depending on your child’s disability, you may need to also research the support systems in place for students with learning challenges.
And since none of the six Texas college programs for students with special needs are available in the DFW area, many families will opt to send their children away from their hometowns. Away from their parents, some students with special needs require more support than what the OSD can offer, notes Bronwyn Towart, program director of College Living Experience (CLE), a post-secondary program that helps ease students into independent adulthood. CLE serves up to 60 Texas students each year with a program fee of $43,500.
“We provide one-on-one tutoring, we do role modeling on how to cook, clean, do a budget and pay bills, and we do social outings and mentoring groups — all the support that helps ensure they’re successful when they go to college,” Towart explains. “When students get to college, lots of things can overwhelm them, like not getting to class on time, planning, stress; they end up dropping out or failing,” she says.
As a result, the price of going to college and being unsuccessful can come at not only a financial cost, but also an emotional cost to the student and to the family. CLE offers a free checklist of skills that students and families can work on prior to beginning college to help set them up for success.
The Siegels say they’ve learned many lessons during this college journey with David. Above all, they’ve learned to never place limitations on their son.
“Do not set boundaries for your children,” Siegel stresses. “Do not assume that they won’t be able to achieve. Every student — disabled or not — needs a good education. It was hard to encourage David when he appeared to be failing, but with help he was able to pass classes after receiving low grades. Our son has taught us to be better parents. Love your children and guide them, but give them independence.”
Dalrymple and Roden now share their experiences and knowledge by doing transition workshops for Texas Parent to Parent to educate parents about what services and educational opportunities are available and how to get them paid for.
“When you have a child with a disability, it’s always ‘What’s the next hurdle?’” says Dalrymple. “It’s not like the other kids we’ve launched. My son is going to require launching every day.”
This article was originally published in September 2015.