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.
School
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.

Healthcare
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
Health
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
Parent-to-Parent
Remain
Hopeful,
Lauren
Lauren
Agoratus is a parent/advocate who works for the Statewide Parent Advocacy
Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that
works to “keep families at the center of
children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers
across the lifespan for the Caregiver Action Network in a volunteer capacity at
http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork
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