Written By: Peter Balonon-Rosen 6/7/15
Any way you look at it, the end of high school is an emotional time: there’s the elation of graduation, the bittersweet goodbyes to teachers and peers, and the creeping apprehension of closing the door on a familiar life and stepping into a new phase.
For the 6 million U.S. students diagnosed with disabilities, the transition out of high school can be a nerve-wracking and challenging experience.
It’s what some educators and advocates call “falling off the cliff” — when students, at age 22 or when they finish high school, lose entitlement to the special education services and support systems that have kept them afloat.
Changing Supports And Loss Of Structure
Under state and federal special education laws, schools are responsible for developing an Individualized Education Program (IEP) for students with disabilities. An IEP dictates services that a student may need to get an adequate education including counseling services, classroom accommodations, transportation and behavioral interventions.
Services for students with disabilities are what Pamela Coveny, staff attorney at Boston’s Disability Law Center (DLC), calls “an entitlement.”
“When you’re in high school if you are eligible for special education services, the guiding principle is, what services do you need to get a free and appropriate public education?” said Coveny. “The school does not have a legal defense that those services are too inconvenient or too expensive to provide.”
When students graduate high school or reach age 22, whichever happens first, the support systems in place shift.
“When you get into the workplace there’s a scale,” said Coveny. “There’s a balance between what is a reasonable accommodation, on the one hand, and whether the employer has a viable, legally-supported argument that to provide those services would be an undue hardship.”
For instance, a student with a visual impairment who may have had someone available to read to them or was provided altered text sizes in high school may be legally denied that accommodation by an employer who says it is too expensive to provide.
For some families whose child had significant needs and received services at a residential school, the transition can be even more extreme.
“There’s no guarantee that the person is going to receive residential services as an adult,” said Hillary Dunn, a fellow staff attorney at Disability Law Center. “For many families that is, I think, the ultimate falling off of a cliff.”
Many special education advocates agree that biggest change for families and students comes in the transition to state human services that may be ill-equipped and underfunded.
“The largest challenge is moving from special education, which is an entitlement, to the adult human service system, which is dependent upon funding,” said Dunn. “And that limits services.”
In Massachusetts, available funding from the Department of Developmental Services (DDS) goes to those that meet certain set of eligibility requirements. Due to limited funds, Dunn has seen families of other individuals with disabilities face barriers.
“Even if a person qualifies as somebody with an intellectual disability, that in no way means they are getting residential services,” said Dunn. “We don’t have enough money to provide residential services for every person that needs it, let alone wants it.”
And it’s an issue, she said, that has widespread effects.
“You have so many aging parents with adult children with pretty significant disabilities living with them,” said Dunn. “Who’s going to be the caretaker when parents can’t do it any more?”
While not guaranteed, preference to DDS funding for residential services often goes to families who sent their children to residential school.
June Peoples Mallon, communications and development director at 3LPlace Inc., told The Boston Globethat practice can result in “edging out families who have made big sacrifices for years to care for their developmentally disabled children at home, and who are likely to find themselves continuing in the role of caregiver of their adult child.”
Self-Advocacy And Higher Education
For students who go to college, the structure, feel and educational supports that students have been accustomed to can also fall away.
“There is a designated person who oversees the special ed program in [high] school and there are a number of special ed teachers in the school who are certified. There’s a curriculum that’s designed for them,” said DLC’s Coveny. “When people go to college there’s a standard curriculum. Then you’ve got a subset of the population who say, ‘We need accommodations.’”
But those accommodations may not always be as readily available in the college setting.
In college, students are expected to pick classes, manage their own time and keep track of paperwork. While a student’s Individualized Education Program in high school may have included therapy or extra time for assignments, when they reach college some students can be expected to seek out support services on their own.
It requires a degree of self-advocacy that students may not be used to.
“When students exit special education it can feel like falling off of a cliff,” said Julia Landau, lawyer and senior program director at Massachusetts Advocates for Children (MAC). “Whether it’s attending college without the skills needed to self-advocate, to know how to make sure a student gets the accommodations they need, to know when and how to disclose their disability — students who have a great deal of potential don’t always succeed.”
A federal study that tracked youths with disabilities eight years after they left school found that 60 percent had enrolled in college and were much more likely to be enrolled in a community college or vocational school. About 30 percent of those who started college did not graduate or complete their programs.
“They don’t always have the skills they need and don’t have the supports within the college to help them build their skills,” said Landau.
While there is no specific requirement that the Individualized Education Program in high school include self-advocacy goals, there are a number of programs in Massachusetts for students with severe disabilities to learn self-advocacy and look toward college.
Among them are the Self Advocacy Leadership Series, a 10-week program to help people improve decision making and leadership skills, and the Inclusive Concurrent Enrollment Initiative, a program that partners students ages 18 to 22 with severe disabilities with colleges to attend courses, often audited.
Most importantly, advocates say, transition plans should be developed for students while they are still in high school.
Under state law, when a student is 14, the student, parents and educators must sit down and develop a transition plan for the student’s future.
Schools are supposed to hear a student’s aspirations surrounding employment, education and independent living, then develop a plan to teach the student the appropriate skills needed — whether they are academic, social or emotional — so that they will be successful when they leave high school.
The purpose of the plan is twofold. On one hand, it is to lay out a game plan for the student’s remaining time in high school.
On the other hand, it’s to hear students’ aspirations and prevent them from getting unnecessarily tracked into places like sheltered workshops — environments that employ people with disabilities separately from others, often paid below minimum wage.
But many parents and advocates say that schools may never offer the transition services required by law.
“Even though the federal special education law requires school districts to address the transition needs of students with disabilities — and provide specific services that students need to promote employment, higher education and independent living — too many districts are failing to comply with the letter and the spirit of the law,” said Landau.
In the transition from high school, simply knowing what rights families have and how they may access appropriate services after school can be unclear.
So much so that the Arc of Massachusetts, a nonprofit supporting people with intellectual and developmental disabilities, held a full day conference on the matter last year to educate parents and help students through the process.
“We’re really kind of looking at the person in terms of home, community, employment, school, family and trying to do that more comprehensive type of transition planning.” said Kerry Mahoney, director of outreach and education for the Arc of Massachusetts. “It’s complex, it’s confusing and it’s not funded well enough for students.”
Correction: A previous version of this article incorrectly stated that under federal law a student is entitled to transition planning at age 14. The law that guarantees transition planning at age 14 is a Massachusetts state law. Federal law mandates that transition planning begins at age 16. We regret the error.