Down's families want in

Sruthi Yejju
Kellen Ehrenhardt stands in front of the Eureka High School sign.

There is a lot that goes into enabling collaboration between the general and the special education system is a message Teri Ehrenhardt of The Heart of IL Down Syndrome Association wants to get across in Woodford County.

The association is collaborating with Family Matters Parent Training and Information Center for a learning session, “Examining the Evidence for Inclusion” in Metamora.

Ehrenhardt, a board member and Education Committee chairwoman of HOIDSA, from Eureka, said that this learning session will be about social aspects of inclusion of children with disabilities among non-disabled children in the educational system.

“We have seen that it helps the literacy and social skills of children with disabilities when exposed to the general educational system,” she said.

Ehrenhardt’s son, Kellen, 20, was born with Down’s syndrome and about his experiences she said, “My son went to Eureka schools and this opened up opportunities for all the extracurricular activities. Inclusion ensures success after high school and if done correctly it can help in the transition from high school to life outside.”

She told that her son is still in transition and receives education services from the Eureka School District and will continue to do so until he turns 22. Kellen is now in the second year of classes at Illinois Central College, works part-time at Eureka Apostolic Nursing Home and volunteers as a teacher’s assistant and cross-country and track coach.

“He is a big help around the house, has good work ethic and has a great sense of humor,” Ehrenhardt added. “It’s proven that productive training can help children with disabilities be successful in their life.

And it is the law to educate them at the very least in the general education system.”

According to Ehrenhardt, HOIDSA is a very active volunteer group of parents working towards providing support, advocacy, and educational opportunities to people with Down syndrome and other special mental and physical needs, including behavioral issues.

Ehrenhardt added that another parent who is an active member of HOIDSA is Teresa Parks from Metamora, who first suggested having the inclusion training.

Parks said she has been involved with HOIDSA since her son, Nathan, now 19, was just a few weeks old.

“My husband Steve and I are parent members of HOIDSA. It has been a significant source of support for us and other parents of children with Down syndrome,” she said.

According to Parks, the association’s leadership is outstanding and the group has sponsored numerous public awareness and educational activities.

“Of particular benefit to our situation is the range of workshops that the HOISDA has sponsored over the years, many of which have addressed the topics of education and inclusion. These workshops bring in expert speakers who provide the latest information on disability related topics — information that is beneficial for any parent who has a child with a disability and for educators as well,” she said.

Parks added that Nathan currently attends Metamora High School, where he participates in regular education classes, with support, in the mornings and then works at different locations with a job coach in the afternoons.

Like Kellen, Nathan, too, will get the educational services until he turns 22.

“While he participated in the graduation ceremony last year, he did not technically graduate as state and federal laws allow eligible students with disabilities to continue to receive educational services until age 22. However, his educational focus has shifted to a mixture of academic and work-related activities,” Parks said.

Parks explained that she and her husband’s vision for Nathan is that he be included in his community throughout his life and have similar opportunities and experiences as persons without disabilities.

“Nathan has had some extraordinary inclusive experiences. For example, one of Nathan’s work locations is at Sowers Elementary School in Roanoke where he is being mentored on various work skills. The Sowers’ administration and staff have been extremely open, supportive and positive toward Nathan and we can’t thank them enough.

“Likewise, through a friend of ours, Nathan has been included and involved in a youth group at Liberty Bible Church in Eureka. The entire congregation has welcomed and supported him and the youth group has included him in all activities and trips. Youth group members have also participated in and supported HOISDA events. The church has been an outstanding source of support to Nathan.”

However, she went on to say that in terms of inclusion in school, they have had mixed experiences.

“Schools have a history of segregating students with disabilities by placing them in classrooms that are separate from students receiving regular education classes. However, laws have changed demanding that students with disabilities, including students with cognitive impairments, be included in the regular education as much as possible with needed supports,” she pointed out.

According to Parks, schools must see to it that: “(i) To the maximum extent appropriate, children with disabilities ... are educated with children who are non-disabled; and (ii) Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

“In other words,” Parks concluded, “inclusion is not a choice, a type of teaching approach or based on a belief system, it is the law.

“We believe that successful school inclusion is the result of a supportive school administration, clear and consistent inclusive policies and practices, teaching staff that has adequate training, and collaboration between regular and special education instructors to develop supports, including modified curriculum, that are meaningful for all involved.”

Parks also stated that, unfortunately, Illinois ranks as one of the lowest states in terms of inclusive education and that there seems to be limited oversight. Parks said she believes it is often incumbent upon the parents of students with disabilities to make schools accountable.

She explained, “Nathan has been able to attend regular education classes at MTHS although the extent to which he has been able to participate through modifications and supports has varied and is sometimes contingent upon the staff who are involved and their personal beliefs about inclusion.”

She said that his fellow students, overall, have been very supportive and positive toward him and though some of the regular and special education staff have truly been extraordinary toward him, the experiences have been inconsistent.

“I requested that HOISDA and Family Matters hold this workshop in Metamora as a means to provide area schools with current information on inclusion requirements and approaches and to challenge schools to build on current inclusive practices. I also wanted area parents of children with disabilities to have an opportunity to learn more about inclusion requirements and approaches to facilitate decision making and advocacy for their children,” she said.

She added that she has worked in the field of disability advocacy longer than she has been a parent of a child with a disability. “I serve as the state-wide director for the Human Rights Authority, a program under the Illinois Guardianship and Advocacy Commission that investigates allegations of rights violations committed against persons with disabilities. My experience as a parent of a child with a disability has had a positive impact on my profession and likewise, my experiences in disability advocacy have benefitted my personal advocacy for my son.”

Parks was recently appointed to serve on the Board of Directors for FMPTIC.

“The mission of the FMPTIC is to build upon families’ strengths, empower parents and professionals to achieve the strongest possible outcomes for students with disabilities, and to enhance the quality of life for children and young adults with disabilities. The organization, which is based is Effingham, co-sponsors training events across the state and is an excellent resource for parents and schools alike,” Parks said.

The Project Coordinator of FMPTIC, Nancy Mader said that FMPTIC is 95 percent funded by the U.S. Department of Education with additional support from ARC Community Support Systems. She said they train parents about educational rights for disabled in most of Illinois.

According to Mader, FMPTIC’s guiding principles include enabling parents to have a comprehensive knowledge of their children’s rights so that they can better advocate for their children and that all school districts and parents are capable of cooperative relationships

“We always try to find agencies to set up training sessions. We have a great collaboration with HOIDSA. We are very pleased work with them for this session in Metamora as some parents there were requesting to learn about inclusive education. We want more parents to learn and experience the info we have,” Mader said.

She added that this time they were able to fund a meal for the training as it will be convenient for parents and other interested parties to come after workday and eat while learning.

“We welcome teachers too to our training. We offer Continuing Professional Development Units to educators. This helps pull in teachers, and it is very useful as they have info and comments to share with the parents,” she said.

Mader explained that it is a collaborative learning wherein parents hear how this affects teachers and teachers learn where the parents are coming from and why they want the certain type of inclusive educational system.

She went on to say that this inclusive education has great benefits and better outcome when the children with disabilities are with their non-disabled peers since they learn a lot more skills.

About the workshop Mader said, “We have a powerful session. The “Including Samuel” DVD documentary hits home to a lot of people and has won many awards. It is much better than a dry presentation and is a powerful took to make parents and teachers understand better.”

She added that this informational session is open to parents, grandparents, foster parents, caregivers, teachers, administrators, paraprofessionals, therapists, educational surrogate parents or any interested party.

For more in and check out the info-box.formation and to donate, visit the websites www.fmptic.org and www.hoidsa.org.

What: Examining the Evidence for Inclusion, Including DVD presentation of “Including Samuel”

When: Monday, March 21, 2011 from 5:30-8:30 pm (Buffet Dinner from 5:00-5:30 p.m.)

Where: The Flame Restaurant, 939 W. Mount Vernon St., Metamora

Learn About: Social aspects of inclusion; Academic achievements and literacy skills through inclusion; Accommodations and modifications in general education settings; and Universal design for learning.

Registration: Register online at www.fmptic.org or call (217) 347-0449 / (217) 347-5428 to register. Toll free number is 1-866-436-7842. Email info@fmptic.org. Call HOIDSA at (309) 712-4852 for more information.