Ashley Mabry, who looks forward to family game night, sometimes watches TV and loves her internship at the ARC Pikes Peak Region, knew she wanted to go to college since the fourth grade, when she entered a “talent development” program at Hilltop Baptist School in Colorado Springs.
“She learned to believe in herself,” said her mom, Anne Mabry.
But after transitioning out of the program at age 21, Ashley, who has autism and Asperger’s syndrome, foundered for a decade.
“Reality hit us in the face,” Anne said.
The family couldn’t find a higher ed campus for Ashley to attend with her diagnoses.
“I was always hopeful,” Anne said. “It was always her hope and desire to go to college.”
Four years ago, Ashley began to realize her dream.
Now 35, Ashley is one of three seniors in the first cohort to graduate in May from an inclusion program Colorado lawmakers enacted in December 2016 to enable intellectually disabled students to become fully matriculated at three schools: UCCS, the University of Northern Colorado and Arapahoe Community College.
“Being there means a lot to me,” Ashley said.
Students set career goals and with the help of mentors attend classes, do assignments and earn nationally recognized certificates. Students also participate in clubs, job settings and athletic events and programs.
“I’ve always had this achievement for excellence and showing you can put your front foot forward and that having a disability shouldn’t limit who you want to be,” Ashley said.
The program is not free and in fact is expensive, Anne said.
But, “We made it happen. I invested in her out of pocket.”
‘Inclusive’ education expands
Parents of special-needs children don’t often dream big. Visions of high school graduation, college, career and marriage are cloudy, and uncertainty makes it difficult to bring such aspirations into clear focus.
“It’s a challenge for any family to think about planning for their child’s future, but to have a child who may never fully support themselves, how do you start that planning process is really overwhelming,” said Missy Sieders, whose 14-year-old daughter, Chrissa, a student at Eagle View Middle School, has a genetic disorder that causes intellectual and developmental disabilities.
But with more opportunities than ever for special-needs children to progress medically, academically and socially, and more financial assistance available from numerous sources, the possibilities are no longer limited.
UCCS’ program has grown from three participants in its first year to a current enrollment of 21 students, said Julie Harmon, inclusion coordinator for the campus’ Office of Inclusive Services. This is the fourth year of the funding, with schools expected to sustain the program after that.
“We hit the ground running, hiring staff and student mentors,” Harmon said, “and we continue to see more and more independence among students on campus.”
Students with Down syndrome, autism and other intellectual disabilities are not typically able to enter the college system through normal means, she said.
“We’re talking about a population of people that historically did not go to college.”
The inclusion program replaces entrance exams with a staff evaluation, and, once enrolled, provides assistance with understanding ideas conveyed in curriculum, as well as navigating the large campus and participating in recreational and social activities.
Colorado has ranked among the bottom — 48th in the nation — for offering intellectually disabled people post-secondary opportunities, Harmon said.
“It took us so long to get to the table,” Harmon said. “In moving forward we are looking at getting the community and businesses to understand what it means, now that students will have these comprehensive certificates that provide a career pathway.”
Financing education, though, can be “a big challenge” for families, said Harmon, whose son is one of the three spring graduates.
While students in the inclusion program can apply for local and state scholarships, community waivers and support through the Department of Labor’s Division of Vocational Rehabilitation, there is still “a portion of private pay” for a lot of families, Harmon said.
Family planning is essential
Expenses related to medical appointments, procedures, therapies, devices and transportation can be hard enough to bear, let alone saving money for college and care in the future, parents say.
“So many families struggle with debt,” said Rob Wrubel, author of “Financial Freedom for Special Needs Families” and father of 16-year-old Sarah, who has Down syndrome and is a cheerleader and varsity track and field competitor at Palmer High School.
“Families are overwhelmed,” he said, adding that he regularly speaks around the nation to “help get people motivated and simplify financial planning so they can take some action.”
The process can be daunting, said Sieders, who works as a parent adviser at PEAK Parent Center. The nonprofit organization in Colorado Springs provides free and low-cost services to families of children with disabilities and promotes inclusive education.
“It’s scary; sometimes you don’t know who to ask, and sometimes you don’t want to think about a lot of it,” she said.
Wrubel advises families to first get out of debt and build an emergency fund for unforeseen expenses, then consider thinking what they want in the future.
“Then, the planning pieces become a lot easier.”
The decision to create a special-needs plan signifies a commitment to do things differently, Wrubel said.
For example, setting up a special-needs trust can provide money for extras and help secure a more stable future for special-needs children.
The government benefits disabled children receive — Supplemental Security Income in Colorado was $771 per month last year — help pay for food and shelter, and Medicaid covers health insurance.
“Those two programs provide basic needs but are not enough to have a great quality of life,” Wrubel said. “If my daughter wants to go to the movies or needs support down the road, the trust can provide that for her.”
People mistakenly equate a trust with being rich, Sieders said. But parents can contribute whatever they have, even if it’s a small amount.
“If all you can do is invest $5 a month or a week and have one less cup of coffee, your investment will grow,” she said.
Sieders’ daughter Chrissa spent four of her first 12 months of life in hospitals for problems with her thyroid, heart and stomach.
When Chrissa was 5, Sieders and her husband started researching how to provide for their daughter’s future.
“My husband is in sales, and whenever he gets a big check, we’ve committed to taking a good portion and putting it in college funds and Chrissa’s special needs trust,” Sieders said. Money from relatives for birthdays and holidays also have been socked away in the account.
Another public assistance program, the Achieving a Better Life Experience or ABLE Act of 2014, allows states to create tax-advantaged savings programs for eligible people with disabilities. Funds from the 529A ABLE accounts can help designated beneficiaries pay for qualified disability expenses.
The value of government benefits over the course of a lifetime is worth hundreds of thousands to a few million dollars, Wrubel said, and should be included in financial planning.
“Families are stressed and don’t always have enough money — depending on the type of disability, the additional costs can be significant,” he said. “Once they focus on what to spend their money on, they can learn to save. A lot of it is changing habits, as much as anything.”
College seemed impossible
Ginger Stringer wishes someone would have told her about free early intervention services for children ages birth to 3 years old. She thinks that would have helped not only her son’s medical condition but also her family’s finances.
“If kids are identified and referred for services before 3, 30% do not need anything after 3 and the rest need significantly less because you’re rewiring the brain,” she said.
Stringer’s 22-year-old son Ryan is in his third year of college through UCCS’ inclusion office. His developmental delay has restricted his language to the level of a toddler, and he has sensory problems that preclude him from looking people in the eye or carrying on a conversation.
“He’s been doing great — it’s a fabulous program, but he needs quite a bit of support with meals, transportation and mentors going to his classes,” Stringer said.
Ryan has a student job on campus and is interning at a local medical office. His goal is to work in the health care industry because “he likes to wear scrubs,” his mom says.
College is not something Stringer thought would happen for Ryan, who, after being born, awoke at 2 a.m. every night and screamed, vomited and had diarrhea until 6 a.m. The pattern went on for a period of three years, until he finally was diagnosed with gluten intolerance.
Stringer quit her managerial job in sales and catering at The Broadmoor to care for Ryan full time. Without her income, the family spiraled into debt and remains in debt, she said, as they now work to pay for Ryan’s college expenses.
“We didn’t anticipate him going to college, so we didn’t save for that, and now everything goes to him going to college,” she said. “We also continue to support him financially with housing, food, clothing and transportation, as public funding will not cover those items sufficiently.”
If Ryan obtains a full-time job, he likely will earn minimum wage, which won’t be enough for him to be independent, his mom said.
Plus, “Many employers do not feel ‘comfortable’ or ‘equipped’ to hire someone like my son, so getting a job is a challenge, and many kids end up doing volunteer work — thus needing public assistance, which is a cost to society.”
Stringer recently re-entered the workforce, providing community outreach at The Resource Exchange, an agency that offers services for children and adults with intellectual and developmental disabilities to become more independent. As part of her job, she now educates families about the free early intervention services for children under 3 diagnosed with 25% delay in communication, physical ability, fine or gross motor skills or social/emotional skills.
“We probably spent $2,000 a month out of pocket for many years on his speech, occupational and physical therapy,” Stringer said. “As a parent, you do whatever it takes for your kid. My thought was, ‘I don’t care if I have to live in a tent.’
“It’s not like this affects everybody, and unless you live it, you don’t really have any clue what it’s like.”