Saturday, March 1, 2014

“Who You Gonna Call? When Family Caregivers get hit on all sides”

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Family caregivers of children with special needs may feel overwhelmed when dealing with multiple “systems.”  This could include special education, healthcare, family support services etc.  Here are some common issues that may arise for family caregivers and resources to help.


The teacher calls regarding your child’s challenging behavior.  Your case manager calls and says they may need to change your child’s placement.

Most parents don’t know that they are part of the IEP team that makes educational decisions, including IEP development and placement. The Individuals with Disabilities Education Act (IDEA-federal special education law) states alternate placement only occurs if appropriate supports and services are unsuccessful.  For challenging behaviors, a Functional Behavioral Assessment (FBA) will show why the child is behaving in a certain way and a Manifestation Determination must be done to decide if the behavior is due to the disability before placement is changed.  Children are entitled to receive a Free, Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) as close to home as possible.   This could range from having an aide, to resource rooms, to a separate classroom going from least first to more restrictive.  Families can get free help from their Parent Training and Information Center (PTI) - see resources below.



Your child is turned down for SSI/Medicaid.  The insurance company won’t pay for therapy your child needs.  Your home nursing hours are being cut.

Family Caregivers should know that they can appeal when their child is denied a service, therapy, or any changes.  Only 1/3 of families appeal claims even though half of the time it’s turned around in their favor on first appeal.  The best way is to send an appeal with a doctor’s note of why this is needed in writing, certified/return receipt, and keep copies to follow-up.   SSI and Medicaid can also be appealed usually by submitting additional information though families may need free advocates to help if this doesn’t work.  If your child’s condition hasn’t changed, there should not be a cut in hours and if they have more medical issues, hours should be increased.  Parents can get help from their state affiliate of Family Voices and/or their Family-to-Family Health Information Center-see resources below.

It is also important for families to remember that mental health falls under healthcare as well as physical health.  Caregivers should know that mental health issues are biologically based and there is no shame/blame as it is just like a diabetic who needs insulin.  The organ affected just happens to be the brain which symptoms manifest as behavior.  In fact, there is now mental health parity (treatment for mental illness is equal to available care for physical conditions.) The Affordable Care Act (ACA) should make it easier for families to access mental health as one of the 10 “Essential Health Benefits (EHBs).”  Families can get help with mental health issues from the Center for Social & Emotional Foundations of Learning (CSEFL), Federation of Families for Children’s Mental Health (FFCMH), or the National Alliance on Mental Illness (NAMI) - see resources below.

Family Support

The respite provider lets you know that they’re discontinuing their service.  The state department of developmental disabilities says that there is no funding for services.  You’re simply overwhelmed with dealing with your child’s condition.

There are many services considered “family support” such as respite, home modification, behaviorists, etc.  For parents of children with developmental disabilities there are even Governor’s Councils in each state.  Families may have to get creative in finding solutions.  For example, for respite families may be able to “self hire” and get reimbursed by an agency if their current agency is no longer providing services.  Parents may decide that their child no longer needs one service and that may free up funding for another.  Families may just need to talk to another trained volunteer parent of a child with the same condition to see what they did in the same situation.  Families can get help from the Council on Developmental Disabilities and all families (not just DD) can get help from Parent-to-Parent – see resources below.


Caregivers of children with disabilities need to know that they don’t have to “take no for an answer.”  There are ways to advocate to get the services their child needs, and organizations willing to help them. 


Resources for Family Caregivers of Children with Special Needs:

Parent Training & Information Centers
Family Voices/Family-to-Family Health Information Centers
Mental Health
Center for Social & Emotional Foundations for Learning (young children)

Federation of Families for Children’s Mental Health
National Alliance on Mental Illness
Family Support
Councils on Developmental Disabilities
Remain Hopeful,
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network in a volunteer capacity at or FB


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