Information In a Box

What is Information in a Box? Information in a Box is a family support program for families who have a child with a disability.

It provides support in several ways:

  • Families receive information on resources in their communities from someone who understands the needs of families.
  • Families receive information on resources as their child grows so they can be prepared for each transition.
  • Families receive information on their child’s disability.
  • Families receive information on laws and federal programs that are set up to assist children and adults with disabilities
  • Families receive information from a Parent Advocate who becomes an ongoing resource and support person.
  • Families receive a sturdy file box that helps them understand the importance of having well-organized files and gives them a format to work with.

Why is it important to get information on community resources to parents?

Each family who has a child with a disability must learn to navigate a very complex system of information and resources. The more information the family has about the systems of support that exist in their community, county, and state the more effective they will be at parenting their child.

Can’t they get that information from the schools or on community Websites?

Getting the information that you need means asking the right questions.Parents who have a child with a disability often don’t even know what questions to ask. For example, a parent may find out that the day care that cares for their other child is not equipped to care for their child with a disability. Who do they ask for help? Can they get a trained person to go to the day care and care for their child? Can they get childcare in their home? Can they pay a relative to care for their child? This is the type of information that would be provided in the Information in a Box. Information that we know that parents need – even if they haven’t thought of the question yet!

Once they have the information, why do they need an ongoing program?

Each transition for a child brings new challenges. Even if your child does not have a disability, transitions from one developmental step to the next may be difficult. Dealing with the “terrible twos,” starting school, and getting through adolescence are all phases with issues that parents may find difficult. We all ask our friends and families for advice and we go back for more advice as our nondisabled children grow and change. But the parent of child with a disability may not know anyone who can help them through these transitions. Getting information once is not enough – the information parents need changes as their child grows. So it is important that a program like ours is ongoing.

Parents of adult children with disabilities become more and more concerned about having a system of support that will be there for their child even if the parents can no longer provide that support. While parents of young children are not ready to set up special needs trust funds, apply for social security, or help their child purchase a home, parents of adult children are ready and eager for this information.

Shouldn’t the doctor or the school have information on the child’s disability?

No professional can have all information on all disabilities. There is day-to-day information that parents need and they need to have a way to access that information.

  • Should my child with Down syndrome be in a gymnastics class?
  • What socks are the best for a child with sensory integration issues?
  • When do I start teaching my child Braille?
  • Should my child with cerebral palsy have a computer at school or learn to write?

Parents today want to have all the information so they can decide what will be best for their child. The information in a Box program is a way that parents can get additional information on any disability related topic through the Families Together Outreach Library.

Why do they need information on the laws and regulations?

People with disabilities and their families worked hard to have legislation passed that would ensure that children with disabilities would receive an education, that people with disabilities would not be institutionalized simply because they have a disability, and that buildings and programs would be accessible to people with disabilities. Parents need to aware of these rights so that their children are not left out of any programs that receive federal funding. Parents need to know what these rights are and need to be continually updated on any changes in the laws and the services resulting from those laws.

Can’t parents just receive the Information in a box by mail?

The most valuable resource that a person can have is a friend who understands and cares. Parents of a child with disability often feel isolated and overwhelmed as they try to do their best to raise this child that they love so much. The person who brings the Information Box to the parent also brings their experience and friendship. They are parents who understand because they have experienced the same concerns and faced the same challenges. They not only provide information to the parent but they also can help the parent sort through all the information and find the resources that they need right now.

Why a Box?

Parents spend a lot of time meeting with physicians, teachers, psychologists, therapists, and other professionals who help with their child. There are school reports, medical reports, insurance records, assessments, tests results, financial accounting, and documentation that will be needed when those meetings take place. Having a child’s paper work organized in a portable file box means that parents can just pick up the box and go to any meeting and know that they have all the paperwork with them.

Being organized is one way that parents can do their job better. A big part of being organized is being able to find medical, educational, and other records on your child. Being able to produce the paper work when it is relevant at a meeting can often save the parent from having to retrace their steps with proper documentation.

The Information in a Box program supports loving, caring parents by providing them with resources, information, and friendship so that they will have more time to focus their energy on meeting the needs of their child.

PLEASE DONATE
So many families are waiting for a a box. Be a “Box Guardian” For $50.00 a year you can be the guardian of one box that will live with a family and help the parents get organized.