Pennsylvania Parents and Caregivers Resource Network

Perspectives on Special Education  

Inclusion and Local Support for Families 

While moving to PA in mid-1997 was stressful, my husband and I had been careful to choose a school district that seemed open to Inclusion for our oldest son, Billy (medically fragile/delayed). Scrounging up the resources that we needed in order to understand how the various systems worked in PA, however, proved to be a serious challenge. There were many wonderful things, but it took so much work to find out about them!

I was very pleased, therefore, to receive a note in the mail early in the school year that invited parents of Special Education students to come and discuss starting a support group. It was a relatively small but determined group of parents who started PERC after that meeting. PERC is an acronym for Parents/Education/Resources/Community.

It was clear to the parents who attended originally, that we needed to make acceptance our first issue. We wrote our mission and goals to clarify that we welcomed parents/ guardians of children with educational challenges, or who were suspected of having challenges. We actively encouraged parents of children who received Special Education services, had 504 Service Agreements, or Instructional Support Team services. Our premise is that parents are the ones who should make the placement choice for their child – not the system.

We were also cognizant of the fact that the only way parents could make an informed decision about their child’s placement was to offer them chances to educate themselves about Special Education issues. We also felt that we needed to extend this opportunity to educators when possible.

Since many parents were unaware of what services, recreation, medical centers, etc. were available in their home area, we also felt a priority was to establish a resource center with materials –books, pamphlets, videos, etc. that were available to parents, educators, and therapists. We were able to do this primarily through a Mini-Money Grant through PPCRN and through information gathered from every possible resource we could locate.

As a final goal, we felt that we needed to find a way to a) make the community more aware of what our children were capable of and b) find ways to encourage our children to be welcome and active in the community. Life does not stop at 3:00 or at age 18, when school ends.

We developed a newsletter. We created a mailing list from our meeting sign-in sheet. We distributed information about PERC to MH/MR and other local groups. We established regular meetings, but attendance varies dramatically. The important thing is that parents have somewhere non-judgmental and accepting to go to when they need it.

Through the efforts of many people, PERC has been instrumental in helping children and parents to make more of their special education programs and community resources. We have hosted a PPCRN Mentor Parent Pal training (terrific way to bond and grow), as well as guest speakers from agencies and programs. We’ve heard from advocates. We have a resource library available. We have put families in touch with agencies. Several parents have mentored others, allowing the less experienced parent to attend IEP meetings with them. Children have been referred for testing and have obtained IEPs or 504s. Many of these same documents have been “tweaked” until they worked.

Fortune has also smiled on us in many unexpected ways. One of our members also happens to have English as her second language. She has been a blessing to us, able to act as a liaison for our Latino population.

 Our Special Education Department and School Superintendent have actually been very supportive. We made efforts to let them know, in the early stages, that we were not trying to be vigilantes: we wanted Special Education to

WORK for our children. In return, they have been very supportive in sending out our newsletter 3 or 4 times a year, and in referring people to PERC.

They have currently given their support to having teachers attend a Regional Advocacy Conference presented by PPCRN in the district in mid-February. Teachers, too, have realized that we are available as a resource and have requested speakers and topics and attended some meetings. I firmly believe that the more involved teachers are with the families of their Special Ed students, and the more both sides see that they have many of the same goals, the better off the children will be.

With this same goal in mind, members of PERC have been involved in programs outside of the school district. A few members have been involved with a PDDC grant at the YMCA/YWCA that encourages Inclusive Community. Others have created a program entitled Project A.B.L.E. (Acceptance By Learning Experiences). A.B.L.E is a hands-on disAbilities awareness program. A.B.L.E. was presented on a small scale at the Family Involvement Conference in Harrisburg. Tentatively, it is scheduled to be presented to our local school district in the year 2001.

I am especially proud of the efforts made by group members to present a united front against some biased, anti-inclusive goals that were being considered by members of our local school board. It was quite a thrill to see parents of children with placements across the spectrum, sitting next to each other at a school board meeting, and fully supporting each other’s right to choose the appropriate placement for their child! I am not saying that PERC was the only reason these parents fought for their children, on the contrary, many fought years ago to have their children included. But having an organization to get the word out enabled others to participate who might have missed it otherwise. And we succeeded. The initiatives that were proposed have been dropped. Information is power!

On the down side, I can say that there are people who have come to a single meeting and never returned There are those who don’t feel the school district should be involved, that certain people shouldn’t attend, or that certain personalities are a problem. We do take these issues seriously. We continually discuss at meetings how to encourage others to attend, and what our ultimate goals should be. I do believe we can honestly say it always boils down to the same answer:

Together, we have the power to do what is necessary to make Special Education a success for our children.

For additional information on Inclusion check out our Links to Related Sites page.

Caregivers of Adults Group

The POWER Network of PPCRN for Families of Adults with Developmental Disabilities

The Power is in Our Hands!

The POWER Network of PPCRN is a statewide network of families and guardian caregivers of adults who have joined together for providing each other with information and support. The Network helps to support their advocacy efforts for facilitating inclusion of their family members, fostering self determination and improving services.

Call: Joleen Barry, Information Consultant, at 1-800-325-4963 for details. Joleen is especially knowledgeable about the mental retardation waivers.

If you are trying to start a caregivers network or group and need help, please call us at 1-888-572-7368!

Prepared for Pennsylvania Parents and Caregivers Resource Network by: Diana Morris Francis - 570-459-5557

717-561-0098 PPCRN 1-888-5-PARENT

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