Family and Child

Eleven percent of children with special health care needs in Pennsylvania have conditions so complex that it always affects their daily activities regardless of their age. The condition can affect the child's ability to get out of bed, to get ready for school by himself or herself, to eat a meal without additional assistance, to do homework independently, to play outside with other children or to use the bathroom.

A special health care need or chronic condition directly affects, first, the child with the condition. The effects are not only physical, but also emotional.

Sixteen percent of the children with complex special health care needs miss more than eleven days of school per year. In addition, to missing school, children with special health care needs spend much more time accessing the health care system. They have three times the number of office visits that children without special health care needs have. Of these children, eleven percent of these children do not have a personal doctor or nurse. Having a need to be seen medically much more frequently, yet having no one to go to, can be intensely frightening for the parent and the child.

The physical effects of some chronic conditions may also cause children to look or act differently than their peers. They may have to take time away from classroom work for treatment or therapies, or to take medications. They may not be able to play outside because of temperature issues, allergic reactions or inaccessible environments.

The physical effects of a chronic condition can further impact a child's emotional well-being. All too often, children with chronic conditions or special health care needs are viewed as being "different" or "weird" by their peers. In today's world, it is challenging enough to be a "typical" kid. Add to that having to take special medications or having a diagnosis that other children do not understand, and growing up becomes much more difficult. This can lead to social isolation and a myriad of behavioral health concerns, including depression and anxiety.

The effects of the child's chronic condition can be enormous, not only on the child, but also on the child's family as well. Many parents experience physical, emotional and financial consequences as a result of their child's health status. While caring for their child, all too often parents forgo the health care that they themselves require. From failing to eat a well-balanced diet or not having time to exercise, to not seeing a health care provider for an annual check-up or even being seen when sick, the health of a parent is often sacrificed.

At the time of diagnosis, parents are often overwhelmed with the news and information that they are receiving. Their hopes and dreams of having a "typical" healthy child have been changed forever. For some parents, hearing the news leads them down a path of depression, anxiety or isolation. For others it can lead to a path of determination to find solutions. Sometimes there are no treatment options, while other times there are so many options that they do not know where to begin.

Parents don't know what they don't know. Some do not know where to begin to find information or resources related to the chronic condition. Others do not know what to ask the primary care physician or the specialist. The stress levels can peak quickly and parents need to have resources available to help them reduce this stress. Unfortunately, this much needed break can be very difficult to find. It is challenging to locate a respite provider with the clinical knowledge or skill set to care for a child with a special health care need.

In addition to the physical and emotional strain, families also experience financial stress. Parents spend so much time trying to care for their child and coordinate their child's care that, on average, 13 percent of parents of children with special health care needs must stop working completely, while 17 percent cut back on their work hours.

This reduction in income is combined with, for example, increased costs of traveling to and from hospitals, parking each day, adding a new electrical system to the home to support the equipment that the child needs, the increase in the cost of utilities from running that equipment and on and on. Or there are home modifications to be made to insure that a child who uses a wheelchair can get into the home, that interior doorways are wide enough for a wheelchair to get through and that a bathroom is accessible on the first or second floor. Couple these expenses with the need for accessible transportation, and the expenses can add up quickly.

Siblings are also impacted by the special health care need. Many siblings feel left out or "forgotten" as their brother or sister with the special health care need requires the majority of the attention of their parents. This can lead to resentment or anger towards the child with the special health care need. Or, in other instances, the sibling becomes an active participant in providing care and supporting the child with a chronic condition. This can result in a sibling who is "parentified".

The Caring Program is a family-centered program dedicated to meeting the needs of each individual family. By doing this, the Caring Program strives to minimize the stress experienced by families, coordinate care so that families have a clear understanding of their child's diagnosis, can advocate for their child, can maintain employment at their desired level and provide resources that support the entire family.

For more information on resources available to families who have a child with a special health care need, go to our Resources page.