Beyond Brochures

January 25, 2012

How to research and evaluate premium college support programs for students with learning disabilities.

By Wendy Byrnes and Eileen Crumm, Ph.D.; Finding Solutions LLC

GETTING STARTED

In recent years, more and more students with disabilities have graduated from high school and entered the post-secondary educational environment of college or vocational training.  The good news is that in response to this population’s unique learning profiles, a growing number of programs that offer support to those students have emerged.  Such programs may offer a menu of specialized or premium services that can include academic tutoring, liaison with post-secondary programs, coordination services, life skills instruction, social skills training, coaching and mentoring, vocational education, job internships and job placement.

Students with disabilities that are leaving high school should look for classes or a course of study that interests them.  It may include community college, vocational and certificate programs or a university.  This is a daunting task for many students, as they plot their course in life – hopefully independently.  College is achievable with preparation and meaningful supports and it is particularly important that students take ownership of their future, whenever possible.  A question that must be asked is “Who is holding the expectations for what will happen once a student leaves high school?”  Parents and professionals need to continue to mentor and advocate for the transitioning student while aligning future expectations with desires and capabilities.

While supported programming holds the promise of helping a student transition to a productive, young adult life, no one program will provide a panacea.  Due diligence should be done when investigating various options and looking well beyond any program’s brochure and marketing efforts is an absolute must.  The old adage of “wherever you are, there you go!” provides a healthy measure of truth for consideration in whatever plans are made.  Students and their families (along with professionals that may support the transition process) should be informed and empowered to find the most current and appropriate range of options.

As the demand for specialized support programs has increased, so then has the supply. Recognizing an opportunity for additional areas of service, various colleges, universities, for profit and nonprofit organizations have attempted to fill a void for services.  However, the population they propose to serve is far from homogeneous.  Rather it consists of young adults who share a tremendous desire to succeed and be independent, but have varying ability and skills to do so.   This means that a program needs to have both depth and breath in order to successfully serve its intended clientele of young adults with disabilities.

Some students with disabilities who enter college may be unprepared to manage their new-found independence and freedom.  They may struggle with navigating the new terrain of a college environment and be more fragile emotionally and socially. The fortitude of even the highest achieving student is tested when managing the ever-changing priorities of juggling classes, course work and living away from home.  For students with organizational or processing issues, the stress may be magnified many times over.

Programs that support students should be earnest and committed to the initial and long- term success of the student.  Students and parents may be vulnerable to programs that appear to make big promises and in the end, deliver less than desirable results.

Building a quality program takes time, expertise and commitment.  But to meet the rise in demand, programs can be put into place too quickly.  They may not have robust organizational structures and could fail to meet the divergent needs of their target population.  Others are too new to show any real or meaningful outcome data, so it becomes difficult to judge whether attending such a program would actually help a youth to become a successful adult.  The mission of any program selected should match the individual student’s expectations and needs.

Families who have pursued independent programming or services in the past for their children may have more familiarity with the specialty program or school selection process.  However, others that have used public school services or may be sending a young adult off for the first time will find they are navigating in unfamiliar terrain that can be overwhelming.  Investigation, planning and close examination of potential programs ahead of time can save costs and avoid buyer’s remorse in the long run.

PROFILE OF THE SERVICE PROVIDER

First, exactly what kind of program is being considered and what college(s) or vocational programs does it affiliate itself with?  Is the program embraced and supported by the faculty and administration of affiliated institutions?  How inclusive is the program with regard to the general population of students?  Are services centralized or decentralized and what other resources may be available such as counseling, writing centers or assistive technology labs?

Check that the associated colleges and vocational programs are ones that the student would actually want to attend.  Ensure that the classes that he/she may take (whether it be ceramics or physics) will be offered at the institutions affiliated with the support program.

It would be important to visit places like the office of specialized services of the associated  campuses and get a feel for how they deliver overall educational services and supports to students with disabilities.  Although both the Americans with Disabilities Act and Section 504 of the Vocational Rehabilitation Act of 1973 protect students in higher education, some schools and programs are much more willing to make accommodations for students with disabilities than others.  Ask to see printed materials that professors and staff are given to explain various disabilities and the rights and responsibilities of students.  Choosing a program that works with an institution offering relaxed time tables for completion of degrees or certificates may be a key element of success for some students.

Another factor to consider is how long the college support program has been operating as some programs are rapidly expanding to multiple sites.  Some of the sites may be more established, or offer a different mix of studies, or have a more inclusive student culture.  Families and students considering a support program should see how transparent the organization is in the way they operate. Try to get an understanding about the philosophy of the support organization to see how they actually view their work. Ask questions about the experience, training and stability of the staff working with students.   How is staff hired, trained and managed?  Is there a separate curriculum (for example on life or social skills) that is offered to or required of students?  What is the ratio of students to staff?

Find out if the support program is a for profit entity.  Contact the Better Business Bureau to see if there have been any complaints or actual lawsuits lodged against it.  If it is a non-profit, ask about the stability of the funding to run the program long-term.  In either case, get detailed information about the “real price” for attendance.  Think about additional costs that may not be covered in the price quoted in the brochures such as housing, additional daily living expenses and out-of-state tuition for the associated college or university etc.  Is there financial assistance for students entering the program or support applying for it? Has the program developed any additional links to public funding like the Department of Vocational Rehabilitation or Department of Developmental Services when appropriate?  A very clear picture should emerge about the financial commitment involved

APPLICATION PROCESS

How are student’s applications reviewed to make sure they are appropriate for the program?  Is their a mandate for complete disclosure to ensure the safety of all students?  What is the ratio of students who apply to students who are accepted? What is the general age range and make up of the student body?  What does the interview process like?  How competitive are the placements for the program?  Is there a minimum SAT score and/or other academic requirements to meet?  What kind of supplementary information is required as part of the process such as psycho-educational testing or proof of disability in order to be considered for admission?

How involved is the student in the process?  Does the support program require new students to review and agree to a standard of behavior?  Does it provide liaison to the college to ensure that the student’s disability is appropriately disclosed and that the student can avail of all the supports they are entitled to?  Are students expected to know how to explain their disability to staff during an interview?  If a student takes medication, are they expected to know what it is, what it is for and whether they manage their medication on their own?

As students move toward programming beyond high school, so much is expected or inferred and while the chronological age of the student may be 18, maturity and baseline knowledge about self-care may be delayed or emerging.  As part of the preparation or application process for college or added support program, families need to think through the level of independence for each student and the upfront knowledge and skill level required to manage classes as well as personal lives.

Students leaving high school may be surprised to find out that the special education process as they may have come to know it has ended and that they will now encounter a new system of accommodation only verses accommodation, modification and remediation.  It is important to know about (and obtain) the type of current documentation needed to show how a student’s disability may affect them.  Effort is no longer rewarded as much as results and students should be prepared to understand the shifting expectations in college.  Assessments that have been completed on behalf of a student need to include recommendations that trigger accommodations.

Another critical question in the investigative process is how is actual recruitment into the support program facilitated?  Are there student enrollment targets that sites may be trying to meet?  Do consultants, management or admissions staff get incentives for getting students through the door and for keeping them there? How likely is staff retained by the program to pressure students to stay in order to receive said incentives?  How much time do the admissions people spend in the actual program to know what is currently happening “on the ground?”  What information can they provide on the make-up of the group of students in the program?

Families should check to make sure that marketing efforts and materials presented actually match the specific services that are delivered.  Be weary of the brochure that looks too good to be true.  Some support programs spend a great deal on marketing efforts to woo students and parents can get caught up in the pressure to place their child.

CONTENT OF THE PROGRAM

Some programs offer a menu of services while others offer a more standardized model.  Whichever may be chosen, it is essential to know what is on the menu for a student.

Transitioning to a new school environment is huge for any young adult.  Therefore, the first issue that comes to mind is finding out what support exists for the student as he or she transitions into the setting.  Are there initiation or orientation processes? What kinds of additional services (if any) exist for any ongoing problems or concerns?  Does the program appoint a mentor or “go to” person for an individual student?  What is the activation process the student would use if they needed a specific support?  How available and approachable is staff to deal with student’s concerns?  How well does the student actually articulate their concerns, challenges or needs so that others can support them in their requests?

Beyond academic support, what is in place for assisting students who may have health issues, mental health struggles or a general breakdown in day-to-day functioning?  Does the program have a list of trusted allies to which a student can be referred?  What training is in place for staff to spot potential problems including abuses, aggression or violence?  Is staff trained to recognize when a student may be considering self-injury or suicide?

Is there programming in place for students to support those that are shy, socially awkward or isolated?  Are students encouraged and supported to join in the broader community?  Are activities mandatory and how are they selected?  What happens if a student is fearful to attend group activities?  How are disagreements or insults among students handled in a group?  How is leadership and compassion encouraged?  For particular students, social success may be far more critical than academics as a marker of present and future victories.

When a student falters or experiences additional trouble, what happens?  Are there measures in place to assist the student?  What happens if the student remains unsuccessful?  How willing is the program (and any educational entity related to it) to keep a student enrolled?  Is there assistance to look at other options if the current option fails?

Once a student has reached the age of majority, communication will (and legally should be) primarily be with the student and the educational entity and program.  Waivers must be signed by students if parents expect to be in the loop for exchanges of information.  Some programs want ongoing parent support and others may discourage it.  It is important to know the policies and expectations ahead of time.

If a student is going to be housed on campus or nearby, check out how solid, stable and conveniently located the housing is.  Is housing that is owned and operated by the program or institution itself offered?  What oversight is involved?  Who handles maintenance?  Are there significant leasing commitments to think about?  How are shared expenses for roommates handled?  Is there a student handbook that covers rules for co-existence including policies for drug and alcohol use?  What is the policy for having guests in the rooms or apartments including boyfriends or girlfriends that spend the night? What happens when roommate issues arise or how might an initial roommate selection process take place?  How are matters settled in a dispute?  If students are in dorms, what kind of resident adviser support might they get?

Equally important to note is if housing is in a safe neighborhood with nearby amenities.  Is it accessible to public transit and are students given any support or instruction to utilize whatever transportation options are available?  If the students are housed in apartments, is the general public living there as well and who makes up that population?  Families may want to look at crime and local police blotters to see if there has been violent crime reported in the area.  Is there limited access to student housing (and supports) during holidays and school vacations?

SERVICE DELIVERY

The next crucial piece to consider is how services are delivered.  Does the student self-select for services?  What if they need additional organizational support?  What kinds of external organizational supports exist?  Does someone regularly check in with the student including making sure that outside class assignments are completed, tutoring sessions attended? Is anyone tracking the overall well-being of the student?  Are there records to track services that have actually been rendered?

Ask program staff about the kinds of classes that students actually take.  Are they credit or non-credit classes?  How many students actually complete a degree? If students are taking classes at the support program’s site such as study, life or social skills, how is that measured in terms of success and building upon emerging or existing skills?  How is that reported and documented?  Is there an opportunity for fluidity in the program or is it more rigid in the way it delivers standard services?

If parents must sign a contract for services, be careful when reviewing and BEFORE signing.  Take care to see how iron-clad the contract is and whether there is an escape clause if the program is not successful or a failure to deliver promised services can be substantiated.  Can services be prorated?  Is there a varied selection of services to choose from?  Must a student sign up for all services if only certain services are needed? Is there a dispute resolution process in place for programmatic or contractual issues?

Last but certainly not least, a program should encourage a student with a disability to become the very best self-advocate they can possibly be.  Who will help them to understand the ongoing and changing process for asking for appropriate accommodations with regard to their classes or in the workplace if they are learning a vocational trade? Students with disabilities must access post-secondary programs that will steadfastly support them in their earnest efforts to succeed not only academically but in self-awareness and self-determination.

OUTCOMES FOR STUDENTS

Every parent wants to believe that they are sending their child off to a program that offers positive results.  With that in mind, what are the reported outcomes of graduating students like?  If it is a newer program, what kinds of grades and progress are students making that have entered the program?  How is success measured?  Some programs feel that getting a student integrated into the general scheme of college life and then letting them spread their wings on their own IS success.  Others may want to follow the student through the entire program.  Ask for references to gage other’s experiences with the program.  Check for blogs that might exist about the program as commentary can be quite sobering to read and content should be checked for its validity.  There are also a number of blogs and posts on social media that document local dorm and apartment living so bear that in mind when looking.

CONCLUDING THOUGHTS

Post-secondary, supported programs should create an atmosphere of authentic hope tempered with realism.  Many supported programs accept students well past the age of eighteen and there is time to prepare and amass more coping skills and maturity before utilizing a comprehensive supported program if one is actually needed.  But students must be ready and motivated before they commit to the program that appears to have the best set of services and supports to assist them in their unique journey toward personal independence and achievement.  Being a wise and knowledgeable consumer who has done the needed ground work to find a support program with integrity and commitment to its students will certainly be worth every bit of time and effort involved.

 

Moving Into the World of Employment

August 10, 2011

Contributed by Cathy Pratt, Ph.D., Director and Chris Filler, Professional and Parent, Ohio from Indiana Institute on Disability and Community

Every three years, the Indiana Resource Center for Autism (IRCA) is legislatively mandated to conduct a needs assessment survey. As part of this survey, families are asked questions about topics such as insurance coverage, Medicaid waivers, impact of educational programs, interactions with the criminal justice system, and other relevant topics. The past two surveys have asked family members with children no longer attending school programs about the employment of their sons/daughters on the autism spectrum.

In 2006, the IRCA survey showed that 61% of individuals (over age 18) represented in the survey were unemployed, 14% worked in sheltered workshops and 25% worked in community jobs. Those who are currently employed work an average of 21 hours per week and have a median annual income of $6,516. This figure is troubling considering the dramatic increase in the number of those receiving educational services under the eligibility category of ASD, and the realization that this population will soon be entering the adult service system en masse. It’s also troubling because it illustrates the misunderstandings among many professionals concerning the realities and range of ASD.

Families advocating on behalf of their sons/daughters on the spectrum will come to realize that many adult providers have not received current and accurate information on autism. This lack of knowledge will impact eligibility and the types of services the person will receive. Below are 10 recommendations of information that adult service providers will need to know.

  1. Adult service providers need a thorough understanding of ASD, the spectrum and the diagnosis. It is not unusual for there to be tremendous misunderstandings about Asperger’s and those at the “upper” end of the spectrum. Often these individuals are perceived as being willful or manipulative. For those with more significant disabilities, there is a misunderstanding about the potential gifts and talents they may possess. Adult service providers must understand the complexity of ASD, and that there are no generalized services that will work for all. They must understand that ASD is neurological and not a mental illness or emotional disorder.
  2. Those with ASD require a creative and careful assessment process. Many people with ASD often have unique skills that are not necessarily obvious during a traditional assessment process. They may possess skills suited for a specific “niche” that could lead to successful supported or competitive employment. Identification of these skills often occurs through careful observation, interviews with those who know the person well (e.g., family members or the individual him/herself) and a longitudinal assessment process. Several hours of traditional assessment or a checklist of vocational skills often misses the person’s unique and most important strengths.
  3. Be willing to think “outside the box.” Traditional vocational programs are not always the most appropriate or successful. Vocational/employment programs, supports and services all too often seem to be offered in terms of available options, instead of what the person needs and is interested in doing. Due to some people’s narrow focus and need for functional routines, there are situations when all of the available/traditional options for employment are equally unsuccessful. Sadly, there are times when a person is forced into an inappropriate setting and fails miserably. Agencies may then conclude the person is unemployable, rather than searching for a job match that acknowledges skills and talents. Do not assume that the person with ASD that struggles with communication and socialization has that same level of challenge in all areas. In fact, assume the opposite! Many areas of skill will be significantly more developed than social-communication skills.
  4. Be aware of sensory processing challenges. These challenges often limit many with ASD if gone unrecognized and un-accommodated. The person with ASD’s perception and ability to tolerate or cope with the sights and sounds of a typical work environment can be quite different than that of their co-workers. Accommodations can be made and coping skills can be developed. However, this does not happen automatically, quickly or under threat of losing a job. In fact, the person will likely shut down or quit rather than deal with the situation or attempt to explain the difficulties. This does not mean that the environment needs to be silent or rigid. It does mean that opportunities to periodically leave a stressful environment should be available and without consequence. Environmental control or accommodation can dramatically change the quality and quantity of the work or product, while presenting the person in the most positive light.
  5. Build on strengths. This should be the philosophy when working with any person. However, the strengths of those with ASD may be less obvious and may be more narrowly focused than those of others that come to the attention of agencies that provide employment services. Rather than addressing deficits, opportunities should acknowledge strengths and interests, when possible.
  6. Prepare, prepare, prepare. Be certain the person understands what is to happen during the assessment, work site trials and work training processes. Some require visual supports to assist in this area. Others may need to visit and explore the environment. In some cases, a verbal description and explanation of the situation, schedule and expectation may be sufficient. However, always err on the side of concrete and visual supports.
  7. Communication should not be all talk. Fewer words often are better. People have a tendency to talk too much to folks on the spectrum, regardless of whether the person is verbal or not. They assume that a verbal person will be able to understand verbal expression equally as well as other employees. This is misleading as some with ASD may use many words, but have limited receptive language. Be prepared to use more written and concrete communication and directions. Develop schedules, visual sequences of tasks, and information about the written and unwritten “rules” of the work culture. Employers and co-workers should be aware that the words they say may not communicate meaning as much as environmental reminders and cues. And finally, realize that many of these individuals do not understand sarcasm, innuendos and double meanings. As a result, the directions that we provide may be confusing or meaningless.
  8. Consider carefully the environment and predictability of the job. Workshop-type settings often are the worst for those on the spectrum. These settings typically contain many people, loud noises, and a lack of privacy or a place to get away. Even the person that seems less capable may perform better in a community setting with support than in a sheltered setting. Intermittent employment may not be a good idea either. Seasonal, ever-changing jobs increase the likelihood of anxiety, stress and behavioral escalation. This does not mean to place the person in a boring or static situation. This does mean that the predictability and stability of the employment will go a long way in creating an efficient and successful employee. If the job is one that offers change, use environmental and organizational supports to create predictability and structure.
  9. Social expectations require instruction. Social challenges are a hallmark of the ASD diagnosis. These challenges extend beyond the school years and can dramatically affect the person’s ability to successfully integrate into a work setting. Be prepared to help the person understand the social expectations (“rules”) of the job. These often are “unwritten” or “hidden” rules of the work culture, and can be critical for acceptance. Do not assume the person will “read” the social climate and adjust. It will not happen. Instead, prepare the person by teaching expectations. Rehearse how to greet, ask for help, “small talk,” compliments, etc. The employer should be aware that if social errors occur on the job, these should be calmly addressed in a very direct manner. Subtle suggestions will not work.
  10. Systems must work together (delays can be deadly!). The traditional “hand-off” between school and adult services over a few weeks or even several months often ends in delays in service or employment, misunderstandings and even failure in achieving a successful outcome. Agencies must work with schools to identify students early, begin to actively work with the school team to get to know the student, and begin to identify adult services and potential employment. Timelines vary from state to state and agency to agency. Funding and eligibility requirements may get in the way of a smooth transition. It goes without saying that funding will always be an issue. However, agencies must begin to create opportunities to work together systematically so that the transition is “seamless,” or at least does not unravel all together.

One final thought for family members: As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities. An issue of the Autism Advocate highlights stories of success that occurred because family members pushed the system and expected a different type of future for their child. Hopefully, these exceptional stories will become common occurrences someday.

Pratt, C. & Filler, C. (2007). Moving into the world of employment. The Reporter, 12(2), 1-2, 13.