Kids and Chronic Illness: From IEPs to Social Settings
Apr 30, 2019
504’s and IEP’s
It’s important for parents to know the difference between a 504 plan and an IEP. A 504 provides basic accommodations in the classroom such as greater access to the restroom or allowing for a change of clothes. An IEP provides interventions such as taking tests in a separate room. A 504 can be established without parent involvement, but an IEP must involve parents.
It is best to discuss 504 plan’s and/or IEP’s with your child’s school as early as possible. Provide the school with diagnosis specific resources to ensure that staff are knowledgeable about your child’s diagnosis. Establishing a plan early will impact whether they receive services as they transition to higher levels of education.
For older students, reach out to their school’s office of disability rights to understand what accommodations they can make for your child. Some students with bowel or bladder conditions have requested longer test taking times, and their own rooms.
Involve your child in decisions about their healthcare. Allow your child to advocate for themselves and the services they believe they need. Some children may be more concerned with missing recess and play times with peers, while others may be more concerned about missing homework. Some teens may value extra time between classes to use the restroom.
Managing Social Settings: Deciding What to Disclose About Your Child’s Medical Condition
There is no one “right” answer to the question of who and what to share about your child’s medical condition. It is a decision based on each families’ values, priorities and comfort level.
Consider these questions as you and your family work through this decision:
Is it medically necessary for this person to know about my child’s medical condition?
What does this person minimally need to know to care for my child and keep them healthy?
What is my motivation for disclosing this information to this person? Am I disclosing for social support, or my child’s medical care?
Is this the appropriate person to provide this information to?
What are the consequences of disclosing information to this person? Consider both positive and negative consequences, as well as your child’s reaction to the disclosure. Are there any unintended negative consequences which could arise?
Be mindful about social media posts about your child’s medical condition and go through the same decision-making process as you would for disclosure to a school official. Posts of information on social media can have long lasting consequences, some of which cannot be anticipated.
Social Support for Children and Families
Connecting Families: Peer-to-Peer Mentor Program provided by Nationwide Children’s Hospital: Allows families the opportunity to connect with someone who has walked a similar path. Trained volunteer mentors may assist families through empathy and experiential knowledge
Pull-thru Network: Volunteer organization that provides education, support, and advocacy to children and families with anorectal, colorectal, and urogenital disorders.
Center for Parent Information and Resources: Provides assistance to parents of children with disabilities. Links families with parent advocates to assist with requesting educational accommodations for children https://www.parentcenterhub.org/
This is not a comprehensive list of recommendations and may not work for all families. It reflects our collective knowledge and experiences working with families and children with colorectal diagnoses.
Learn more about Nationwide Children’s Hospital’s unique collaborative psychosocial approach to care by joining our webinar, Chronic Illness: From IEP to Social Settings. Click here to register.
Connor J. McDanel, MSW, LSW, is a clinical social worker with the CCPR. His role includes case management, care coordination, facilitation of support groups, and collaboration with other professionals on the team to provide best outcomes for patients and families.
Rose Schroedl, PhD
Rose Schroedl, PhD, is a pediatric psychologist who specializes in the psychological care of children and their families with Inflammatory Bowel Disease and other gastrointestinal disorders.
Charae Keys, MSW, LISW-S
Center for Colorectal and Pelvic Reconstruction (CCPR)
Charae Keys, MSW, LISW-S is a clinical social worker for the Center for Colorectal and Pelvic Reconstruction. Charae’s role includes case management, care coordination, facilitation of support groups and collaboration with other professionals on the CCPR team, to provide best outcomes to patients and their families.
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