A child with complex needs is someone with two or more needs that affect their physical, mental, social, or financial wellbeing, or those needing significant additional support on a daily basis. Children may develop these needs because of an accident or injury, but they can also be born with them. In the U.S., around 18.5% of children under the age of 18 have special health care needs, although the exact percentage of children with more than one need is unknown. There are four major types of special needs: physical (for instance, cerebral palsy and multiple sclerosis), developmental (including autism, Down’s syndrome, and processing disorders), behavioral/emotional (for instance, ADHD), and sensory (including visual and auditory impairments). If you are parents of a child who has been diagnosed with one or more complex needs, what steps should you take to move forward and ensure your child has the very best care possible?
Not all complex needs are identified immediately. Cerebral palsy, a condition affecting two to three children out of every 1,000, is typically diagnosed between the ages of 18 and 24 months. It is important for parents to find support from other parents with children with this disorder, since doing so will cut short the time required to discover crucial numbers, advice groups, childcare advice, and information on charities that provide helpful resources. Some networks are founded by groups of families whose children developed conditions like cerebral palsy because of medical errors/birth injuries. Forming part of a community can help parents know their rights and obtain advice on everything from legal steps to take, right through to possible treatments such as stem cell therapy and alternative treatments.
In the United States, Supplemental Security Income (SSI) is the only source of federal income dedicated to disabled children. Children admitted to this program receive around $647 per month though higher amounts are sometimes given in the case of more complex needs. If your child qualifies for SSI, they will automatically be entitled to Medicaid as well. Both Medicaid and the Children’s Health Insurance Program (aiding children in families earning too much to qualify for Medicaid) cover almost 50% of children with disabilities in the U.S.
These programs cover many of the medical and long-term services your child will need — including visits to the pediatrician, lab tests, and prescription medication. Medicaid also ensures that care services such as private duty nursing and transport to medical appointments are available. You are also entitled to tax breaks (7.5% of your adjusted gross income) if you have a child with complex needs.
There are many specific organizations providing different types of funding for purposes such as accessibility, medication, recreational opportunities, equipment, and more. Just a few of the many organizations you might look into include the Disabled Children’s Fund (which provides braces, wheelchairs, crutches and more equipment to children on a global scale), the Giving Angels Foundation (aimed at enhancing a child’s everyday life), and Gracie’s Hope Inc. (which helps provide funds for a number of therapies including speech, chelation, and hyperbaric oxygen therapy). There are dozens of support groups and networks available, so in addition to speaking to families in a similar situation, invest time in research into organizations based in the U.S and abroad.
If your child has just been diagnosed with a complex need, taking on a proactive stance from the start can help you create a sound strategy and achieve your goals as early as possible. Speaking to other parents and finding out your legal and financial rights are key. So, too, is discovering your child’s potential eligibility for everything from financial aid to specialized equipment that can significantly improve their quality of life.