LAKE REGION - With the information and support from the Special Kids Network (SKN) and the Pennsylvania Elks Home Service Program (Elks), parents of children with special needs are being empowered to advocate for their children.
In 2012, the Elks program united with the SKN to combine the program's resources, as a way to help parents in need of a little direction. Prior to the merger, each program had their own specialty, but both have always aimed to help families with special needs.
Initially, Elks did home service care, where nurses would visit homes and help families. Since 1997, the Special Kids Network has worked with families to obtain information and referral services. To expand the services, when the programs joined forces in 2012, six regional coordinators were hired to spread the word of the program's resources throughout the state of Pennsylvania.
What makes the regional coordinators' assistance unique however, is that they all "walk the walk," explains Lori DeVoe the northeast regional coordinator. A mother of six, four of DeVoe's children have special needs. She says the coordinators are different because they, "know the nitty gritty," since each coordinator has experienced the trials and tribulations of seeking assistance and information for their children.
There are 23 nurses located around the state and they go to peoples' homes, free of charge, through a program that is not insurance or income based. To receive assistance, DeVoe says it is as easy as calling 1-800-986-4550 to find services. That toll-free number has been the same number with the Special Kids Network since it started, where an Elks nurse is available to provide information.
With the assistance of the nurses, DeVoe says people may learn about resources that they are eligible for and just weren't aware of. The nurses are different than the coordinators, explains DeVoe, because the nurses will learn what assistance families already receive, where as a coordinator will work to help families discover what they need.
DeVoe says families often build such great relationships with the nurses, that they consider them to be more like a friend or a member of the family than a nurse. Although the nurses are a resource for the family, DeVoe says by parents learning how to advocate themselves, they will teach their children how to become self-advocates. Assistance from a nurse, may include a little direction when a parent tries to get an individualized education plan (IEP) for their child or applies for medical assistance.
When a family is frustrated because they may not understand something, DeVoe says that a family gathering meeting can help them, as their questions may get answered and they will have a voice. With the help of a coordinator, she says together they will work to try to find a solution. As a coordinator, DeVoe says she understands the frustrations because she knows what it's like to get a denial and fight for services. The meetings, she says, are informal and convenient for the families. Anyone can have a meeting, by getting in touch with a coordinator or an Elks nurse, sometimes the issue is easily resolved or it may be as simple as an answer to a question.
If a regional coordinator learns that there are a number of people in need of clarification about a health care issue that affects children, a Special Kids Network meeting could be arranged. Through the SKN meeting, questions are often answered and relationships are formed as those in attendance have the same goals to help their children's needs.
Twice a year, there are Parent Youth Professional Forums (PYPF) which aim to give direction to families, on a larger scale than the SKN meetings. The four-hour forums present speakers, offer networking opportunities for parents with professionals and more. Based on topics that many families deal with, there will be professionals available to answer questions and share their knowledge. The latest PYPF will be at the Wallenpaupack High School March 1 or a snow date is set for March 8. Athena Ford from the Pennsylvania Health Access Network will give a presentation about the Affordable Care Act.
The forums are awesome, DeVoe says, because the professionals bring materials for families, lunch is provided and parents' mileage is reimbursed the IRS rate. Also, daycare is reimbursed up to four hours at $12 an hour.
No matter the disability, DeVoe says SKN will help a child up to the age of 21 and Elks actually helps people over 21. For the Elks assistance, the person just has to have had the disability before they turned 22 years of age.
Despite being located throughout the state, DeVoe says it is amazing how aware the nurses are of scholarship opportunities that can help families. When one family receives help from an Elks nurse, DeVoe says the family is also gaining the knowledge of the other nurses, which she calls a, "wealth of knowledge."
Although she works hard and can help parents, DeVoe admits that she doesn't, "have the magic bean." She explains that while she converses with families, she works with her superiors at the Department of Health who also looks to others, trying to find a solution for a family. Ultimately, DeVoe says if something is important to one family, it's important to the entire SKN and Elks programs because other families might also be facing similar struggles.
Having been in the position many families are, DeVoe says she is motivated to help others because she doesn't want others to go through what she has and so the first step in receiving some guidance is by calling 1-800-986-4550. By calling that number, an Elks nurse can provide information about healthcare resources, education, employment, technologies and more.
There will be a Parent Youth Professional Forum (PYPF) in the Wallenpaupack High School cafeteria on Saturday, March 1 from 11:30 a.m. to 3:30 p.m. Snow date is March 8. Contact DeVoe by February 24 to register by calling (570)-949-4152, email: or visit