Students with Intellectual Disabilities Can Use Federal Funds for College Opportunities

With more than 260 College Programs available for students with Intellectual Disabilities (ID), it’s no longer a question of whether the new generation of students with ID can go to college but how to pay for it.

Vineet Narayan recently graduated from high school, and wanted to do dual enrollment at a community college as part of his transition to a 4-year university. Vineet’s transition program staff refused to support this path.

Vineet Narayan graduation from high school

Vineet’s mother, Nithya Narayan explains “The district’s transition program is supposed to support Vineet until age 21, but none of their programs work on academics. He could learned so much navigating a community college, but instead they have him working on functional goals. I fought hard, but the staff won’t change their mindset.”

College programs are expensive. Tuition is often as much or more than tuition for typical college students. This coupled with the fact that most families of children with ID have no savings for their adult child really creates a real barrier to these new college opportunities.

Now the Department of Education issues guidance that these students can use Vocational Rehabilitation (VR) and Individuals with Disabilities Education Act (IDEA) funds to pay for expenses related to dual enrollment, comprehensive transition programs, and other college programs.

Vineet should have been able to use IDEA funds to attend community college as a dually enrolled student, but Stephanie Lee Smith of the National Down Syndrome Congress (NDSC) says the guidance on IDEA funds is less clear. “This is a real step forward and the guidance on VR funds is clear, but we need further clarity on IDEA. The new guidance appears to say it’s allowable to use funds from IDEA, but there would need to be state guidance. The Department of Education states a Free and Appropriate Education (FAPE) is only guaranteed in primary and secondary schools, but I would argue that IDEA’s 2004 regulations leave this type of decision up to the IEP team. Advocating for guidance in all 50 states could be daunting.”

Vocational Rehabilitation (VR) programs are state run, federally funded programs who’s main goal is to give people with disabilities the support they need to get to work. With this goal in mind it seems fitting that VR funds should be used for postsecondary education. Think College reports that “Individuals receiving postsecondary education services from VR do show higher rates of competitive employment and improved employment outcomes including higher earnings and greater number of hours worked per week.” In fact, the employment rate upon completion of college programs for students with Intellectual Disabilities is 90%. That’s compared to an employment rate of less than 20% for people with ID at large.

Stephanie Lee Smith, who’s been busy advocating for this type of guidance since 2005, says the real challenge now is getting the word out. “One of the challenges is going to be how it will be adopted and used at the local level. How will this information get out to the regional offices. Some regional VR offices do a good job, others do not. Attitudinal barriers will need to be brought down so that VR counselors understand students with Intellectual Disabilities could benefit from post-secondary education.”

Vineet is still busy applying for entry into a 4-year university for the fall of 2020. Nithya says after hearing about this new guidance she contacted her local Vocational Rehabilitation program. “Our VR says they will give money towards educational supports with a goal of employment, but the programs funds have been frozen recently. We’ll see!”

Does your loved one with ID use their local Vocational Rehabilitation services? Do they have plans to go to college? What barriers do you face? Share you story below.

October 25, 2018February 19, 2019

How to Vet College Programs for Students with Intellectual Disabilities

Vineet Narayan graduated from high school last spring and during his gap year he’s on the hunt for a college program that fits his needs. Searching for the right college program is daunting for most students, but Vineet’s mom, Nithya Narayan, says sending her son with Down syndrome to college adds a few extra concerns.

Although the college search process has been surprisingly typical in many ways, Narayan says “It did seem surreal to hear from schools and acknowledge the gap between having no access to curriculum and having to audit college classes, which seems incomprehensible. So I attended the State of the Art conference to see if he could really attend these programs without barriers. We want him to have the liberty to choose classes and make a career path, which is what the typical students do. As I was researching, some of these programs have definitive classes that they have to take which is not what we want.”

College programs for students with Intellectual and Developmental Disabilities (IDD) have increased by 73% in the last decade. Currently there’s around 260 programs across the nation. These programs range from fully inclusive community colleges or 4-year university settings with on-campus living, to segregated programs on college campuses. There is much to celebrate with this tremendous growth of post-secondary opportunities for students with IDD. But compared to the 7,000 college programs for typical college students across the nation we’re really still in the infancy of this movement.

Read Related Post: College Scholarships for Students with Down Syndrome

I’ve written recently about the good, the bad, and the ugly of these college programs. Although there is federal regulations for the few programs that receive federal funding (about 25 programs), the vast majority receive no federal or state oversight. It’s up to the college and increasingly parents to self-monitor the efficacy of these programs. So, how can parents and students ensure the program they choose lives up to their expectations?

“Parents and students don’t know what they want until they don’t get what they want. Students with Intellectual Disabilities don’t often go to college night like their typical peers. They go to transition fairs instead. There needs to be a whole mindset change starting in high school,” explains Think College Co-Director, Meg Grigal.

Think College is a great place to start your search. Parents and students can search for programs using an interactive map, and check out the organization’s new “How To Guide on Conducting a College Search.” Grigal says parents should share this with your child’s high school transition team to better prepare for that next step.

But don’t stop there! Jennifer Luebke and her 19-year-old son, Antonio, had to renew his college search after the program he was attending failed to keep promises of at least a 50% inclusive course load (As of February 2019, the matter has been resolved to the satisfaction of all parties). Antonio left the program after a year, and now Jennifer has many more questions for the next college Antonio attends. Even though your student may be looking for a different type of college experience, her questions could help guide your inquiry and get you thinking about what questions to ask.

Read Related Post: Bethel University Fails to Keep Promises of Inclusive Education for Students with Intellectual Disabilities

“We developed key questions that will hopefully reveal answers that go beyond the self-reported information on Think College and the college’s marketing materials,” explains Luebke. Parents from the Facebook Group “Families Think College” also chimed in with other questions that are added to Luebke’s questioning below:

“Academic Inclusion: What courses (if any) are inclusive? Provide a list of catalog courses that are available for students with IDD to take where the coursework is modified and where they receive in-class and out-of-class academic support. Do you have courses where typically-abled students are also present, but their role is different from a student with IDD (e.g. as a mentor, co-enrolled as a lab to help students with disabilities, etc.)?
Residential Inclusion: Do you have a policy that prevents a student with IDD from being roommates with a typically-abled student?
Social Inclusion: Tell us how students with IDD are intentionally and regularly included in campus social activities?
Job Training and Internships: How will you leverage his strengths to provide job training to him? What might a few conversation starters be to help him identify a good job fit? What internship opportunities do you have that might be a good fit for him considering his strengths? What percentage of students are employed after leaving the program?
Parental Involvement: Do you require a student with a disability to be their own guardian? How do you determine what level of communication is appropriate with parents and how do you calibrate it?
Metrics: What metrics do you track and how often do you track them to assess the effectiveness of your program and areas for improvement? With whom do you share your findings? How do you measure and assess each student’s learning and progress?
Membership & Belonging: Are students in your program considered enrolled students in the university? Do they have full alumni benefits when the complete the certificate program? Do you have a separately published student handbook and policies apart from the general student handbook (with some areas where additional support is provided where needed).
Philosophy of Inclusion: What is your program’s definition of inclusion or what is your program’s inclusion statement that guides the program?
Qualifications: What are the program director’s educational background, work experience, and specific qualifications to run this program? Are the professors who teach the courses that students with IDD take qualified university professors? What training have the professors received in universal design? What training do students on campus receive about ability diversity?
Please provide us a list of all students and alumni (and their parents and families) that we may contact to ask further questions about your program.”

Nithya Narayan says a “parent comments section” could provide invaluable real-life reviews of how a program actually operates. She says good programs are out there, if you know how to look. “When typical kids go away they shape their life by being an adult and making decisions on their own for their life, and we are very glad that opportunity is available for Vineet.”

How’s your child’s college search going? What is your child looking for in a program and have they found it? What questions have you asked? Share in the comments below.

October 24, 2018December 3, 2019

Bethel University Fails to Keep Promise of Inclusive Education for Students with Intellectual Disabilities

Imagine spending $46,550 a year to send your young adult child to a university. For most typical college students, this price tag would bring with it a full college experience with a wide range of academic courses, dorm life, and internships. Now imagine that you’re spending that amount on your adult child with an Intellectual Disability (ID), and the university you sent them to fails to deliver on promises of a real, inclusive college experience. The family of a student with ID sues Bethel University alleging their son did not receive the inclusive education the program promised.

As of February 2019, the matter has been resolved to the satisfaction of all parties.

This seems to be the reality for at least a handful of students with ID who attended Bethel University Inclusive Learning and Development (BUILD) program in Minnesota. 19-year-old Antonio left the program after his first year, when his parents noticed the BUILD program did not provide enough inclusive classes or internship hours. “I wasn’t happy when the BUILD staff told us Antonio wouldn’t be taking any inclusive classes his first semester so he could ‘adjust’ to life on campus, but I went along with it with the understanding that he would have more inclusive courses in following semesters. Then 2nd semester rolled around and the only inclusive classes he was given were badminton and tennis. He would never be able to make it to 50% inclusive classes by the end of his 2nd and final year after viewing his schedule, so we left the program,” says Antonio’s mother, Jennifer Luebke.

Read Related Post: InclusiveU: What College Should Look Like for Students with Intellectual Disabilities

Luebke and other parents filed an official complaint with Bethel University. From it’s own academic catalog and website, the BUILD program sells itself as a Comprehensive Transition Program (CTP), which means that it must provide students with Intellectual Disabilities (ID) at least 50% inclusive academic courses and internships. In return students with ID can receive federal grant and work-study money to make up the cost of tuition (if they qualify). When the school denied the claims late this summer, Luebke and one other parent filed an appeal.

“I feel like my daughter missed an entire college experience, because she never got to live in the dorms with someone of her choosing or take classes of interest to her like art and ballet,” says a mother who wishes to stay anonymous because she fears retaliation on her daughter if she speaks out. “None of the classes were inclusive. The program staff tried telling us that study hall was inclusive because they were at the library or that the ‘wellness and fitness’ classes were inclusive, but the typical students who worked with them were getting lab credit. In fact, she received a certificate in education, but never took one education class,” she explains. “I hope they’re making changes, but a parent friend whose child is in the program currently says they’re still upset with paying all this tuition for badminton.”

Read Related Post: Legislation Could Continue to Increase College Opportunities for Students with Intellectual Disabilities

Another mother of a BUILD program graduate who now wishes to remain anonymous, also corroborates these problems: “Students were supposedly placed in community settings, but the actual outcome was very limited due to poor planning, lack of understanding of transportation and minimal relationships with the internship site leadership. This resulted in minimal employment opportunities coming out of graduation from the program. In addition, requests for ‘repeating’ the internships fell on deaf ears, with both Bethel and the state sponsor who paid the tuition for the class and vocational ‘mentor’. When Bethel indicated that study time/independent study was inclusive, it made me realize how defensive and baseless their positions were. They have never promoted inclusion in academic classes, other than one drama class. It would have taken effort and substantial belief in inclusion for the program design to have success in that area; I don’t believe that ‘belief’ existed within the leadership at any level. Students were included in the Dance Team (non-academic) and many social activities, which led my daughter with Down syndrome to really enjoy the program in many ways.”

In an October 2018 response to the appeal, Bethel University President, Jay Barnes, admitted wrongdoing occurred in access to academic courses, but denied any wrongdoing in the housing and social aspects of the program. Barnes proposed some changes to the program and additional academic classes for the 2019-2020 school year. He also offered Luebke’s son 20% off tuition in their final year of the 2-year program.

Bethel University declined my invitation for an interview. The Department of Education official responsible for oversight of post-secondary education programs for students with ID also did not return my request for an interview. In fact, it seems there’s no oversight at all. “It’s important to understand the complexity of all of this. The consistency across all of the programs at this stage is very variable. What is required is quality assurance. Until there is an accreditation process there’s going to be problems,” explains Think College Co-Director, Meg Grigal.

So, what are parents and students with an intellectual disability to do when searching for a post-secondary program? How can they ensure that the program delivers on promises? Visit www.inclusionevolution.com tomorrow for a follow up and call to action for those seeking out a credible post-secondary experience.

What has been you or your student’s experience with post-secondary education? Please share your experiences with me below. Share what makes your child’s program successful, or how they can improve the program.

June 20, 2018June 21, 2018

Class of 2031: Yes, My Son with Down Syndrome Can Go to College

With over 260 college options, the future is looking bright for students with intellectual disabilities.

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”.

I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together.

The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work to come.

But why is this even news, you ask. After all, twins graduate side-by-side every spring.

What if I told you my twin boys are so unique that the odds of recreating another birth like them is 14 in a million! I know, I know…I should play the lottery.

But this alone isn’t even newsworthy.

The real headliner here is that one boy is neuro-typical, while the other has Down syndrome.

And the truth is, no one expects much out of the latter. No one, except me!

My twin boys will begin kindergarten in a few weeks, and I’m already plotting how to send them to college. Of course, like most parents, my husband and I have done the dutiful task of setting up a 529 College savings plan for our typical son and daughter.

But doing the same for Troy, who has Down syndrome, would put his future SSI Medicaid benefits at risk. Luckily for Troy, the Achieve a Better Life Experience (ABLE) Act, was just passed in 2014, and now he can save for college too without losing much needed government assistance. Read more about ABLE here.

So, now to investigate college programs.

I know, we’re 14 years out…What can I say? I’m a bit of an obsessive planner. Ok, ok I’m neurotic. I can’t help it. But my investigation into colleges for my son has amazed me!

Did you know there are over 260 college options for Troy, and other people with intellectual disabilities? And he can receive pell grants, work study money, and scholarships to help pay the tuition.

The evolution to better higher education opportunities for people with intellectual disabilities really took off with the reauthorization of the Higher Education Opportunity Act of 2008. But keep your eyes and ears peeled (and your legislator on speed dial), because the act is supposed to be reauthorized again THIS YEAR!!! We can’t go backwards.

And on closer look, I noticed that these college programs are not created equal.

They range from Syracruse’s InclusiveU Program (learn more here), which boasts a 4-year certification program where students take the same exact classes as their neuro-typical peers and live with those peers too….to others where students are completely segregated and only learn life skills. Unfortunately, the vast majority of these college programs fall into the latter category.

Now, I’m not complaining. At least higher education, any higher education, exists for my son. But I’m not going to fight for 13 years for my son to be included with his typical twin brother in primary and secondary education, just to turn around and fight again in higher education.

We need to be advocating for more programs like InclusiveU. We also need the Higher Education Opportunity Act passed with more, not less funds for inclusive higher education.

My hope is by the time Troy and Hunter graduate high school in 2031, most higher education programs will be fully inclusive and lead to competitive paying jobs.

Visit thinkcollege.net to find out what college programs are in your state, and start advocating for full inclusion.

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March 14, 2018March 15, 2018

Disability Advocates Share Resources for Life After High School

For those with disabilities and their families, leaving high school can be like falling off a cliff. Only 17% of people with disabilities are employed in America today; that’s compared to 65% employment for the rest of Americans. Many people with disabilities never received a regular diploma, or proper preparation for life after high school. Now a group of disability advocates want to pave a better path forward.

“My brother has a disability. Growing up, it was hard watching the struggles he and my family faced. We had to move states to get him the resources he needs. When I left home for college, I kept thinking this would have been great for Scotty. But his school didn’t prepare him. Nobody was teaching him how to advocate for himself. My mom struggled to get him the resources he needed to transition to life after high school,” describes Ricky Price, co-founder of The Next Step Programs.

Read Related Post: A Summer of Inclusion at Camp PALS

It was after working at Camp Pals, a summer camp for teens and adults with Down syndrome, that Ricky Price and fellow camp counselor, Josh Fields, agreed something needed to change. These ambitious 20-somethings started The Next Step Programs, a nonprofit that provides resources and workshops geared towards transition. “There’s too few opportunities for these young adults,” says Ricky.

TNS Co-Founders, Josh Fields (left) and Ricky Price

The Next Step Programs (TNS) has created a fantastic online tool for families in search of transition resources. “When students transition out of high school, parents are left to do a lot of digging to find out about resources post-high school. We wanted parents and self-advocates to have a place they could go to find resources with one click. We did the research for you! It includes resources for the states of Michigan and Pennsylvania so far,” Ricky explains.

The resource map includes many transitional services including legal, educational, independent living, transportation, and competitive employment opportunities. You can find the map here. “It’s labor intensive to gather all these resources in one place. We’d like to have the funds to expand to different states, and create a hard copy of the map,” Ricky says.

Read Related Post: Legislation Could Continue to Increase College Opportunities for Students with Intellectual Disabilities

TNS founders have a lot of other ideas for transition resources. With Masters degrees in disability-related services, both Ricky and Josh realize the immense need for more programs after high school, as well as connecting existing programs with people in need. TNS started a video blog series to show case the struggles and triumphs of transitioning youth. “It’s important to share their struggles and successes. We plan to follow up with these self-advocates and their families. We also want to interview family members, teachers, and experts in the field,” Ricky explains.

TNS is also starting a workshop series this spring focusing on the transition from high school to college or competitive employment. “We are inviting speakers to talk about independent living supports, degree vs. certificate track, employment, transportation, and self-advocacy training,” Ricky says.

Ricky believes transitional services are starting too late, and not teaching the right skills for life after high school. “Transition IEP goals should be written by the time a student is 14-years-old. These goals shouldn’t teach specific job skills like how to dust and mop. Anyone can learn those skills later. What’s harder is teaching soft skills like living on your own, advocating for yourself, doing your own finances, finding and keeping a job,” Ricky explains.

Ricky’s brother Scotty did end up going to college, but Ricky says no one prepared him or taught him those all important soft skills. “He didn’t want to use services for people with disabilities at college, because he didn’t want to be defined by his disability. He never advocated for himself. Although he has a good job now, I wish he would have had a better road map for life after high school,” explains Ricky. Now, through TNS, Ricky and Josh are building a better future for others with disabilities one click and workshop at a time.

TNS is having it’s 4th annual Gala to raise funds for expanded programming this summer. You can also donate online here.

Are you having a hard time navigating the transition from high school to post-secondary education or work? Would a non-profit like TNS be helpful in you or your child’s journey? Comment below.