A Blueprint To Advocate For Your Child’s Special Needs By Lisa Math, B.S., CRPS-F, Co-Director of Family S.T.A.R./United Families for Children’s Mental Health Programs, Family Network on Disabilities
Create The Story That Works For You As a caregiver, you will be asked to share your child’s story in many different forums. It can be informal such as speaking with friends and family, or formal, such as working in teams of providers, the school staff, medical providers, clergy, and more. Having that story prepared and practiced eliminates the anxiety of having to share and makes sure that you are sharing all the details you need and want to share. Here are some things to consider when creating that story: • You have a choice of what to say • Know you have control of when you share • You may become the educator of those you meet • You’ll need to overcome the fear of judgement and rejection • Finding allies helps to build confidence • Building trust is a process • You set the boundaries • Incorporate positive messages • Connect with others in similar situations to get examples from which to work Recognize Your Role In Reducing Stigma As a family member, you work hard to support your loved one on this journey. With that, comes the responsibility of knowing you can change minds about stigma. Any caregiver can make a difference, but the passion of a family member knows no boundaries. That opportunity is immeasurable and priceless, so take advantage of that role, and see what can be. Here’s some suggestions: • Educate yourself first, then others • Talk openly about disabilities • Be conscious of language you use • Encourage equality between physical and mental illness • Show compassion for those with disabilities • Choose empowerment over shame • Be honest about treatment • Let people know when they’re perpetuating stigma • Don’t self-stigmatize Remember that being an advocate for your child’s needs requires skills that can be developed with the right combination of fortitude, perseverance, and knowledge. The end result can have lasting impact on your child, your family, and the community in which you live- maybe even the world! q Lisa Math B.S., CRPS-F is the Co-Director of the Family S.T.A.R. (Support, Training, Assistance, Resources) and United Families for Children’s Mental Health Programs for Family Network on Disabilities. She has utilized this information while navigating services for her child throughout the years, and it has proven successful. Family Network on Disabilities is a state-wide organization that provides disability information, resources, training, and support to families, caregivers, and youth to age 26, and to related service projects and providers across the state.
Parenting a child with special needs – whether the needs are physical, emotional, developmental, medical or social – requires a well thought-out and executed approach. Most family caregivers don’t have this knowledge or training and are intimidated by the task. The key is to gain the knowledge to become empowered. Know Your Rights There are numerous laws on the federal and state level that protect individuals with disabilities. Understanding which apply to your child is important for many reasons. First, that information is your armor for the battles you may encounter to secure services. With the law behind you, providers can’t deny appropriate services and resources. Secondly, there are organizations that defend and protect those laws and they will, and can, make it difficult for providers to get funding if they break the laws. Here are some of the laws with which you should be familiar: • Americans with Disabilities Act (ADA), • Individuals with Disabilities Education Act (IDEA) • Rehabilitation Services Act • Health Insurance Portability and Accountability Act (HIPAA) • Seclusion and Restraint Guidelines • Baker Act • Marchman Act • Wes Kleinert Fair Interview Act • Mental Health Parity Act Learn Effective Strategies To Document Your Child’s System Involvement Once you know the laws, it’s important to keep track of your child’s resources, services, providers, etc. to make sure they are receiving what they are entitled to and in the most appropriate manner. By keeping track, you have documentation to refer to when working with various providers, or to use if needed when a grievance needs to be filed against a provider. Keeping track of numerous documents can be a daunting task, so organize in a manner that works for you. Using hardcover binders with section dividers can be an effective way to do this. Some of the documents you need to keep include: • Provider contact info • Medication logs • Medication side effects logs
• Behavior logs • Phone call logs • School documents/IEPs
• Physical/medical records (assessments, evaluations, medical tests, etc.) • Behavioral Health records (assessments, evaluations-psycho-social, neuropsychological) • Insurance documents (policy, explanation of benefits)
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