Leaving Free and Appropriate and Avoiding Expensive and Mismatched
A student with Autism Spectrum Disorder typically exits secondary education between the ages of 18 and 21. At this point, the decision to move on to postsecondary education will likely be even more complex than the decisions regarding primary and secondary education. Postsecondary education is not an entitlement to anyone, and therefore the cast of characters in the decision-making process greatly diminishes. Gone are the IEP meetings where the conference table was once surrounded by therapists, teachers, advocates and governing interests. What was once free and appropriate education quickly becomes expensive and mismatched, if one’s not careful. So many parents find themselves asking: What considerations should we make when deciding on a postsecondary education program?
Ironically, the logical starting point when determining an appropriate postsecondary education placement is to think about the ending point. What are the desired outcomes from the postsecondary experience? In an effort to expand and encourage options for students with learning disabilities offered by institutions of higher learning, the U.S. Department of Education administers a discretionary grant under a program entitled Transition and Postsecondary Programs for Students with Intellectual Disabilities. Institutions awarded this grant are judged partly on their program’s ability to demonstrate student achievement in the follow areas of outcome:
- Academic enrichment;
- Acquisition of independent living skills, including self-advocacy skills;
- Access to integrated work experiences and development of career skills that lead to gainful employment.
These four outcomes seem straightforward enough, and encompass what every postsecondary program should strive for, regardless of participant learning profiles. Of course, the ASD student brings many challenges in achieving these outcomes, and there's no one-size-fits-all solution. It is therefore useful for students and families to consider each of these four desired outcomes as individual components, and identify goals and priorities within each one, resulting in a list of "must haves" and "nice to haves" when researching programs.
Models of Service
When desired outcomes have been determined, how is one to find a program that best serves those outcomes? "Postsecondary Education Options for Students with Intellectual Disabilities," published by the Institute for Community Inclusion, identifies three main types of postsecondary models for students with intellectual disabilities:
1. Mixed/hybrid model: Students participate in social activities and/or academic classes with students without disabilities (for audit or credit) and also participate in classes with other students with disabilities (sometimes referred to as "life skills" or "transition" classes). This model typically provides students with employment experience on- or off-campus.
2. Substantially separate model: Students participate only in classes with other students with disabilities (sometimes referred to as a "life skills" or "transition" program). Students may have the opportunity to participate in generic social activities on campus and may be offered employment experience, often through a rotation of pre-established employment slots on- or off-campus.
3. Inclusive individual support model: Students receive individualized services (e.g., educational coach, tutor, technology, natural supports) in college courses, certificate programs, and/or degree prorams, for audit or credit. The individual student's vision and career goals drive services. There is no program base on campus. The focus is on establishing student-identified career goals that direct the course of study and employment experiences (e.g., internships, apprenticeships, work-based learning). Built on a collaborative approach via an interagency team (adult service agencies, generic community services, and the college's disability support office), agencies identify a flexible range of services and share costs.
Just as there is a wide spectrum of students with autism, there must be a wide spectrum of service models to support those students. Even if one were able to pinpoint exactly the type of postsecondary placement one was looking for based on these categories, services are not conveniently listed this way. For example, when using "inclusive support model" as an internet search phrase, the results are multiple pages and reports with this phrase defined. An actual program offering this model proves more difficult to uncover. The good news is the need for viable postsecondary options is being brought to light in many forums. This identification of need combined with current funding sources is resulting in new programs and pilot programs aplenty. The bad news is that new programs are difficult to assess in terms of outcomes, making it a leap of faith to sign on. Not to mention, new programs start small, and therefore typically accept small numbers of students per year. So not only is one left hoping that the program will meet expectations, but the odds are stacked against the applicant being chosen when so few students are admitted each year.
Making a Good Match
Armed with a list of desired outcomes and basic information about the types of models that have potential for achieving these outcomes, the quest for postsecondary education begins. Bear in mind, the solution may not be a one-stop shopping experience. There may be a combination of service providers involved, creating a tailored program specific to a student’s needs and financial considerations. As you begin the process of researching postsecondary options, the desired goals and objectives should be held firmly in hand, lest you be swept away by the promise of well-meaning but unfounded programming.
The Models in Practice
The inclusive individual support model for postsecondary education is more commonly known as college with accommodations. Postsecondary schools are bound by Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990, albeit to a different degree than school districts providing primary and secondary education. Accommodations are based on disabilities and individual needs. Typically the postsecondary school's disability services office oversees the development and implementation of accommodations, based on the student requesting support. Typical accommodations might include providing note-takers and extended time in taking exams as well as access to a campus testing center. Postsecondary schools are not required to identify or assess needs of students with disabilities. It is therefore up to the student to make sure necessary accommodations are in place.
Some colleges have embedded support programs that go much further than what the typical disability service office provides. These programs include additional supports for the degree-seeking student such as noncredit transition to college/independent living skills courses, tutoring centers, and student mentoring programs. These supports are typically fee-based with charges assessed in addition to traditional tuition and living expenses. It is important to consider whether or not the additional supports will be enough for success at college. What happens if the student stays up all night playing video games and misses class as a result? Is there an executive function disorder that needs to be reckoned with? Are there supports inherent in the embedded program that will check all the boxes in the “must have” column? Knowing the profiles of successful students in the program is invaluable information, as is foresight into what challenges the applicant student is likely to face in a college setting.
A college campus isn’t off limits to the student that isn’t a degree-seeking candidate. Programs classified as a substantially separate model aim to offer an approximation of university living in a fully supported setting. These programs are often staffed by graduate students in special education, and typically provide a supported residential component in addition to non-credit remedial academics and independent living skills classes. Descriptions of these programs often highlight inclusive socialization opportunities via such vehicles as “the campus fitness facility and other campus activities.” It would be well advised to note how these inclusive socialization opportunities present themselves. Strictly voluntary socialization opportunities are likely to be grossly underutilized by the population these programs are designed to support.
Private wrap-around support programs provide services as a separate entity from the postsecondary school. A wrap-around support program usually aims to provide a mixed hybrid option by offering academic, social, and independent living skills support. Students attend classes at a nearby college or vocational school that doesn’t offer an embedded support program. The wrap-around support program offers a combination of segregated and inclusive settings. The cost of these supports, which are only available to program participants, is entirely separate from the postsecondary school tuition, and may not include living expenses. The courses taken at postsecondary schools are typically mixed population and considered inclusive.
Doing the Math
Once desired outcomes are in mind, and the ideal type of program is identified, the next equally important consideration is cost. Financial concerns will always be near the top of any list of postsecondary education considerations. According to the National Center for Educational Statistics, the average cost of a private college education including expenses is nearly $35,000 per year. The vast majority of postsecondary programs available to students with learning, developmental, or intellectual disabilities require additional expenditures on top of standard tuition and living expenses. So it's time to ask the tough questions: Is the cost of tuition plus support justifiable, considering the long term need for financial support most ASD students are facing? Is the program focused on the student’s desired outcomes? Would individualized support (in the form of job skills training, for example) without the approximation of college life be more beneficial? It’s important to know what you’re getting for your money. And more importantly, what you’re not getting. Parents are often attracted to the cleverly written program brochure or website as the heart strings are pulled by the prospect of a struggling student actually attending college. When finding a program of interest, it’s easy to get excited and start researching “How do I get in?” However, a better question might be “What happens when I get out?” With that answer in mind, it’s then time to determine, "Is it worth it?”
Having considered the answers to these questions is probably the best defense against an expensive and mismatched postsecondary experience. The U.S. Department of Education’s Institute of Education Sciences, National Center for Special Education Research conducted a study of special education students leaving high school in 2001. The data compiled in 2010 shows that eight years after leaving high school, less than 10 percent of the students with autism were living independently. Only 24 percent of the population studied was competitively employed, earning more than minimum wage. While many students with ASD do pursue postsecondary education, less than half of those studied who attended had graduated after eight years. These statistics illustrate the fact that support of a student on the autism spectrum is a lifespan issue that goes far beyond the plan of a typical college student. Spending money and resources wisely on appropriate and meaningful skill development should be priority number one. Unfortunately, there is no one solution that fits every need for this population. Fortunately, more options are opening up. Discovering, pursuing, and seizing the right opportunity for the young adult with autism can be a rewarding venture. And if the opportunity’s utmost turns out to be subpar, don’t hesitate to change course.