Parental Issues that Need Attention for Children with Other Health Impairments

Addressing Medical Issues

By their very nature, other health impairments involve medical care and medical concerns. The amount of time that must be devoted to doctor visits, medical appointments, hospitalization, and seeing to the child’s well-being will depend greatly on the nature and severity of the child’s health impairment. For many families, the actual medical care of their child can be a daily, weekly, monthly challenge.

How to deal with the medical side of things? This section of our OHI fact sheet is intended to connect you with resources and wisdom within the health care and parent communities both.

The Concept of a Medical Home

Recently, the term “medical home” has entered the lexicon of health care. A medical home is not a house, office, or hospital, but rather an approach to providing comprehensive primary care (Nolan, 2008). The Washington State Medical Home (2009) defines the term as follows:

A medical home is an approach to delivering primary health care through a “team partnership” that ensures health care services are provided in a high-quality, cost effective and comprehensive manner.

The principles of a medical home are well stated by the American Academy of Pediatrics (2007):

personal physician,
physician-directed medical practice,
whole person orientation,
coordinated care,
quality and safety,
enhanced access, and
appropriate payment.

To find out more about this approach to health care, and to connect with resources in your state, we’d strongly recommend visiting the website of the National Center for Medical Home Initiatives for Children with Special Needs. The National Center is a hub of national medical home activities for children and youth with special needs. You’ll find their site full of information and tools for health care providers and families, including a national medical home training curriculum and links to medical home projects and activities in every state. Enter the site at: https://www.medicalhomeinfo.org/

Another resource you may find especially helpful in addressing the health care and medical issues associated with an OHI is Family Voices. Family Voices concerns itself proactively with the health care of children with special health care needs. Through a network of state chapters, Family-to-Family Health Information Centers, and political advocacy, Family Voices offers tools and informed guidance to professionals and families alike. FV’s home page is to be found at: https://www.familyvoices.org/

Life at School

As IDEA’s definition of OHI makes clear, a health impairment affects a student’s educational performance. In fact, for a child to qualify for special education services in the public schools, the OHI must affect the child’s educational performance.

When a child is found to be eligible for special education, he or she will also be eligible to receive related services in school—which can be very valuable and relevant to the child’s needs. Related services are provided as required to enable children with disabilities to benefit form their special education. Two in particular come to mind for children who have an OHI:

medical services, which are provided for diagnostic and evaluative purposes only, and which are defined as “…services provided by a licensed physician to determine a child’s medically related disability that results in the child’s need for special education and related services.” [34 CFR §300.34(c)(5)]
school health services and school nurse services, which are defined by IDEA as “…health services that are designed to enable a child with a disability to receive FAPE as described in the child’s IEP. School nurse services are services provided by a qualified school nurse. School health services are services that may be provided by either a qualified school nurse or other qualified person.” [34 CFR §300.34(c)(13)]

Many children with disabilities, especially those who are medically fragile, could not attend school without the supportive services of school nurses and other qualified people. Over the years, the extent of the health-related services provided in schools has grown, as might be expected when you consider medical advances in the last decade alone.

What was previously called “school health services” in IDEA was expanded in its 2004 reauthorization to distinguish between services that are provided by a qualified nurse and those that may be provided by other qualified individuals. States and local school districts often have guidelines that address school health services and school nurse services. These may include providing such health-related support as:

special feedings;
clean intermittent catheterization;
suctioning;
the management of a tracheostomy;
administering and/or dispensing medications;
planning for the safety of a child in school;
ensuring that care is given while at school and at school functions to prevent injury (e.g., changing a child’s position frequently to prevent pressure sores);
chronic disease management; and
conducting and/or promoting education and skills training for all (including the child) who serve as caregivers in the school setting.

Determining what related services a child needs is the responsibility of the child’s IEP team, the group that develops the child’s individualized education program. Key information for decision makers will be available from the evaluation process, since a child must be assessed in all areas related to his or her suspected disability. The IEP team must look carefully at the evaluation results, which show the child’s areas of strength and need, and decide upon which related services are appropriate for the child. The school must then provide these services as part of the child’s education program.

When Health Affects School Attendance

It’s not uncommon for a child with an OHI to have periodic absences from school, sometimes even lengthy ones, especially if hospitalization is necessary for whatever reason. During these times, the public school remains responsible for providing educational and related services to the eligible child with OHI. Because IDEA specifically states that special education can be provided in a range of settings, including the home or the hospital, states and school districts will have policies and approaches for addressing children’s individualized needs and circumstances.

The school, therefore, is the best source of information about what local policies govern how services are made available to children with OHI who are home-bound or hospitalized.

When the child is at home, the school may arrange for a homebound instructor to bring assignments from school to home and help the student complete those assignments.
When the child is hospitalized, services may be provided by the hospital, through arrangement with the school, although this will vary according to local policies. (In any event, the hospital is likely to have policies and procedures of its own, and it’s important for the family to find out what those are.) The hospital may want to review the child’s IEP and may, with the parent’s permission, modify it during the child’s hospitalization.
After the child is discharged, the hospital will share a summary of the child’s progress with the school, in keeping with whatever local school policies are.

Planning for Transitions

After a child has been out of school for an extended period of time, it’s important for parents and school staff to plan carefully for his or her return to that setting and the activities that go on there. However, it’s important to understand that planning for a child’s transition isn’t just about when he or she returns to school. It needs to include “moves from Hospital to Home, Home to School, School to School, Hospital to School, School to Work or College, and from Pediatric to Adult Health Care” (Pola-Money, 2005).

That’s a tall order, isn’t it? Fortunately, there are numerous resources available that can help families, schools, and health care providers plan for each of these types of transition. Here are several to start, and they will likely lead you to more:

Conclusion

In closing, we hope that this information is helpful to you. We encourage you to learn more through the numerous resources we’ve listed and through the Search feature on our website, which will connect you with yet more resources on these disabilities.