Because families are their child's primary caregiver and because CYSHCN often need services not covered by insurance, the impact of caring for a CYSHCN is felt by the families in many ways.  The following information is taken from the Data Resource Center.

Financial Impact

According to the 2009/2010 National Survey of Children with Special Health Care Needs, over 21% of families report financial problems due to child's health conditions.  For those families of CYSHCN who have functional limitations or who require above routine Rx meds and service use, this percent is even higher.

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Many services that a CYSHCN needs are often not fully covered by insurance, such as  therapies, home health care, prescription drugs, mental health care, medical equipment, and dental services. As a result, families must pay for these services out-of-pocket.  Families of over half of CSHCN reported spending $250 or more on health care in the previous year for the care of their CSHCN. The families of almost 12 of CSHCN spent between $501 and $1,000, and the families of over 22 percent of children spent more than $1,000.

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Time Spent Providing Care

Families often need to spend considerable time caring for their CYSHCN, depending on their needs, which may include administering medications, assisting with therapeutic exercises, maintaining equipment such as g-tubes and respirators, transporting their children to appointments, monitoring their child's conditions, and communicating with providers.  According to the 2009/2010 National Survey of Children with Special Health Care Needs, 39.2% of  families of CSHCN spend less than an hour a week on these activities, 37.2% devote 1 to 4 hours a week to these tasks, and 23.8% families spend 5 hours a week or more. 

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Effect on Employment

Because for many families of CYSHCN caring for them takes considerable time, many families have had to cut back their work schedule or give up their jobs.  The 2009/2010 National Survey of Children with Special Health Care Needs reports that 25% of families of CYSHCN have cut back or stopped working.  When this analysis is done by type of special need, it is evident that  families of children with functional limitations are even more severely impacted.

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However, giving up a job or reducing the number of hours worked puts parents in an unconscionable bind as they need money to pay for their child's care, as shown above.  

A Family Story

The story below of a family from Kentucky illustrates the overwhelming bureaucratic issues that parents of children with complex medical needs can face.

Most of Brian’s early life was spent in Georgia.  He was born there 3 months early, delivered through an emergency caesarian section surgery.  Due to lack of oxygen, Brian suffered brain damage and several other medical complications, including hydrocephalus, very poor vision (legally blind), and vocal pulmonary dysplasia, a chronic lung disease which required the use of a tracheostomy (trach) tube at various times when he was young.  As a newborn, Brian was sick frequently.  His mom, Bev, cared for him herself, but her confidence was undermined as doctors told her “you don’t know what you are doing” and “it’s all in your head” and “all you need to do is get him up and move him around.”  Bev couldn’t see how this could be done with a trach tube.  For the first 10 years of Brian’s life, his family did not receive home nursing services. Brian was on Medicaid, but Bev did not know that she might have had nursing services to help care for him. Bev had three other small children at home.

When Brian was 9 years old, he contracted an adenovirus and was hospitalized.  He was treated with Demerol, and when his breathing stopped for 45 minutes, he suffered severe brain injury.  He spent 10 weeks at Children’s Hospital and became dependent on a ventilator, feeding tube, breathing treatments, and multiple medications to treat seizures and other conditions.  When he was discharged, Bev was told to “take him home on the ventilator and see how long he lives or take him home off the ventilator and let him die.”  A social worker, though, helped Bev get nursing services to help her care for her son at home.  Bev pursued litigation against the hospital for medical errors and was given a court settlement which was put into an irrevocable trust.

When Brian was 18, Bev moved her family from Georgia to Kentucky.  Prior to the move, Bev asked agencies in both states to identify what needed to be done to ensure his care after the move, but Kentucky officials indicated that nothing could be done until she actually lived in Kentucky.  After the move, Bev contacted the state for home health care services, and was put in touch with the only service provider in her area.  Bev was told that she herself had to be certified in CPR in order to receive services for Brian to live at home, and that this had to be done even before someone would come out to do an assessment.    In Kentucky, providers are allowed to set their own policies, such as this one about CPR certification.  Since this was the only provider in Bev’s area, even though she was very experienced in caring for her son, she complied with this requirement and got the training and certification.

Bev requested that her son receive physical and occupation therapy and a larger wheelchair.  State officials indicated they would need to send a therapist to her home to do an assessment, but that couldn’t be scheduled until paper work was complete.  She was told to apply for a Medicaid Model II waiver.  That initial application process happened relatively quickly and in the meantime, Bev contacted a home health agency to line up nursing services and was told that there would be no problem providing services.    However, after the initial application process, before someone is approved for any services, they have to go to the Department for Community Based Services to complete paperwork about their income and resources.  Bev went to the state agency, waited for about 30 minutes, and then was told she couldn’t be seen that day.  The agency scheduled an appointment for three weeks later.  She was told she also needed to apply for SSI for Brian.  When Bev returned to the state office, she was given additional paper work to complete.  However Bev did not understand what the papers were asking.  The state official didn’t explain the terms.  When she returned to the office, the worker explained that the papers she had been given were for a provider to complete, not a parent.  Bev was asked to complete paperwork to be sent to local banks to document that her son did not have any bank accounts.

Bev contacted the home health agency again – 8 weeks after her initial contact.  She asked about getting nursing services, but this time was told that they had no nurses available.  The agency indicated that they had been trying to hire more nurses, but to no avail.  Bev believes this may be due to the low rate of pay offered under the Model II waiver.

Eventually it was determined that Bev could not get SSI for her son due to the fact that he has an irrevocable trust.  While the trust pays for some of his needs, he would also benefit from SSI. If the trust is counted as income or a resource he will have to pay a patient liability fee to access services through the Medicaid Model II waiver.

Bev indicates that this experience of trying to get services for her son in a new state has been a confusing and a drawn-out nightmare.  She worries about her son’s future. “I’ll be 53.  I have disc problems in my lower back.  I have difficulty walking. I don’t have time to waste.”

* Names have been changed.  Interview conducted by Family Voices and the Kentucky Family to Family Health Information Center, as part of a project with the American Academy of Pediatrics funded by the Health Resources and Services Administration under cooperative agreement #UC4MC28034, Alliance for Innovation on Maternal and Child Health.

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Read more about how famlies of CYSHCN view their experiences with the health care system  in reports from Your Voices Counts, a groundbreaking study conducted by Family Voices and Brandeis University in 2000.