Special Children, Special Care
by: Jenny Wise of Special Home Educator
All children will experience accidents, injuries,
and illnesses. Most of these are temporary and won’t interfere with the child’s
quality-of-life, mental development, or their ability to care for themselves in
adulthood. However, some conditions, such as epilepsy, spina bifida, and
cerebral palsy, require around-the-clock care and lifelong accommodations.
Here, we'll
answer a few of the most common questions related to the everyday (and future)
care of special needs children.
What is a
chronic illness/permanent disability and how common are they?
The University of Michigan estimates that up to 18% of children born in the United
States have a chronic health condition. A chronic condition is any illness or
physical impairment that is expected to last the duration of the child’s life.
Asthma and diabetes are two of the most common chronic illnesses in children
and are typically manageable, allowing the child to lead a relatively normal
life with few modifications. Other conditions, including cystic fibrosis and
muscular dystrophy, persist with permanent life-altering symptoms.
How is
caring for a special-needs child different than that of other children?
Children with some disabilities, such as Down syndrome, require care very similar to
normally developing children. Mild to moderate disabilities may necessitate
additional medical care, screenings, and monitoring for issues of the thyroid,
heart, and cognitive development. Children with more pronounced disabilities
will need assistance with basic functions related to hygiene, medication, and
with any durable medical appliances such as a ventilator, catheter, or tracheotomy tube. Whereas non-special-needs
children are typically self-sufficient by their teen years, those with
exceptional health conditions may require indefinite care and companionship.
Who should
act as caregiver for a special needs child/adult?
At the age of 18, children, regardless of
disabilities, are seen as adults and thus, by law, are responsible for their
own personal and financial well-being. Parents of children with significant
disabilities may wish to apply for legal guardianship status, which allows them
to continue to make important financial and medical decisions on behalf of
their offspring. An adult under the guardianship of another is called a ward.
Often, personal, medical, and financial decisions for the ward are made by the
same person. Physically incapacitated adults may be capable of making decisions
about their care but may not be able to handle financial tasks. In this case, a
conservator may be necessary. A conservator is a person or entity responsible
for making financial decisions for the disabled individual but has no authority
over medical care. As parents age, it may become necessary to appoint a
successor guardian and/or conservator. A guardian/caregiver should be someone
with whom the child has held a relationship with and can be trusted to consider
the child’s best interest for the duration of his or her life. The American Bar
Association explains that conservatorship and guardianship carry
different responsibilities depending on state of appointment.
Are there
financial assistance programs available to help offset the cost of long-term
care?
Medical care is exponentially expensive with a price tag that
can reach into the millions of dollars over the course of a lifetime. There are
a number of federal programs for persons with disabilities to help cover living
expenses and medical costs. The US Department of Health and Human Services
notes there are more than a dozen special services that provide for the
educational and welfare needs of children and adults with disabilities that
prevent them from maintaining gainful employment; this list is a good place to start, but,
depending upon the state of residence, other assistance may be available.
Caring for a child with disabilities is an
emotionally and physically exhausting experience but one that is not without
its rewards. These children are remarkable fighters and instill a sense of awe
and wonderment in their friends and family. Parents of kids with special needs are truly
some of the world’s greatest superheroes with the ability to reach into the
future to ensure the health and safety of their alternately-able children.
