Choices of Educational Environments
Each family of a child living with Barth syndrome (BTHS) wrestles with the decisions of how best to educate their child, and students with BTHS have experienced a considerable range of schooling options. Ultimately, however, the actual choices available to an individual student vary greatly with the circumstances of any given family and region. The following are some of the educational environments that students with BTHS have experienced:
- Public School
- Parochial School
- Vocational School
- Home Tutoring (Hospital Homebound)
- Virtual School
One important piece of advice for parents to follow is that flexibility is essential. It is common for individuals with BTHS to revise their educational situations at least once throughout their educational career. Because the course of BTHS in an individual can change dramatically, parents need to be willing to revisit and rethink their child’s schooling choices when his condition changes. The high school years can be particularly challenging with increasing academic demands coupled with changing health conditions.
The local public-school system is a common choice of parents to educate their children with disabilities. In order for a student with disabilities to take advantage of the laws that protect him, he must be enrolled in the public-school system, and the financial cost of other educational options is often far too much for families to consider seriously. Also, because the laws in the United States require public schools to provide a Free Appropriate Public Education for all students with disabilities, they are often the best equipped to educate students with disabilities.
The downside of relying on the local public-school system is that parents have less control over the quality of the school. Unless parents have the financial flexibility to move into a neighborhood with a public school that is ready and willing to educate their child, they have to hope that the local public school will be a safe and accessible place for their child. If the school is reluctant to learn about and to recognize the seriousness of BTHS, if they use the bureaucracy and the paperwork of the school system to make it difficult for parents to participate in their child’s education—in short, if the school administrators do not make themselves good partners with the parents in educating a child with BTHS—then parents and students have a long road ahead. Many public schools have educators who are truly dedicated professionals; they understand the legal protections of students with disabilities, they make sure that parents understand their rights, and they do their best to meet the needs of their students. At the same time, however, very negative stories of experiences with the public-school systems have been reported by BTHS parents. Each local public school is different from the next.
For some parents, private schools (otherwise known as independent schools) are the best answer for their students with Barth syndrome (BTHS). Because private schools are not bound by many of the regulations that govern public-schools, they have far more flexibility to think creatively in meeting the needs of a student with BTHS. Parents can work with school administrators to create flexible schedules, expectations, and evaluation techniques; and some private schools are specially designed to meet the needs of students with disabilities. Parents do not have to participate in IEP meetings, and they will usually find the process of working with their child’s school a far easier process than working with a public-schools.
The downsides of enrolling a child in a private school can be significant, however. First of all, the cost of private schools often costs well over ten thousand dollars per year[i]. Many schools offer extremely generous financial aid packages, therefore, families should not dismiss private schools outright because of tuition costs. Still, the cost of a private education can often be too much for many families. Also, while the parents of a private school student do not have to worry as much about daunting paperwork, intimidating evaluation meetings, and occasionally complicated IEP’s, private schools are not bound by Section 504 or the IDEA. In giving up the protection of the laws for disabled students, parents must rely on the individual private school to be able to supply their child with an education. They have no legal guarantee apart from their particular enrollment contract with the school, however, that the school will be able to succeed in this endeavor. For more information about private schools in America, parents can begin their research by visiting the website for the National Association of Independent Schools.
Parochial Schools (often Catholic or other religious schools) are a good solution for many families of students with disabilities. Parochial Schools have the same kinds of freedoms that independent schools have, but tuition, even at half the cost of a private school per year, parochial schools may still be unaffordable to the average family. Also, most faith-based schools do not restrict enrollment to students of the school’s faith. Many Parochial Schools do offer generous financial assistance to students. Parochial Schools should not be ruled out based upon assumption of cost. If families are comfortable with the school’s religious identity, students can often get an excellent and affordable education in addition to the spiritual and ethical instruction.
Every state in the U.S. has Vocational Rehabilitation Services offices. Students over 16 years of age can receive vocational testing to help them identify possible options and career paths. A vocational school, however, might have requirements for its students to take certain classes, such as shop and mechanics classes that might pose physical challenges to students with BTHS. Under these circumstances, parents must work out with the school the appropriate requirements and expectations for their child. Often times funding and services are available through Vocational Rehab that would not be available to meet the students' IEP needs. Parents should explore potential services available through Vocational Rehab.
HOSPITAL HOMEBOUND HOME TUTORING
One way to take advantage of many of the homeschooling advantages without the parents’ having to take on the responsibility of educators is home tutoring. With home tutoring, professional educators come into the home to teach a child. This would obviously be an extremely expensive option if parents were to pay for private tutors, but some state and local school districts provide teachers for students who are home-bound. Under the requirements of FAPE, a student with an IEP might be able to receive home tutoring paid for by the school district if he cannot attend school enough to receive an appropriate education. If the local school system does not supply home tutors, parents might consider contacting a nearby university to find a student who could provide home tutoring, and some parents have also relied on retired educators to provide tutoring in the home for their child.
Home tutoring, of course, does not provide a perfect solution. Students will still need opportunities to socialize with peers, and when relying on outside tutoring coming into the home, parents must depend on the reliability, flexibility, and skills of individuals who might not be very reliable, flexible, or skillful. As always, these solutions must be considered on a case-by-case basis.
Some parents make the choice to homeschool their children for at least part of their educational career, and for the purposes of a child with BTHS, the homeschooling option allows for incredible flexibility. The student can function on a schedule best geared to his physical and neurodevelopmental needs. He has constant access to the people who can best care for him. He does not have to deal with the stresses of being different from his classmates. Furthermore, the homeschooling option can be very inexpensive compared with other forms of non-public schooling options.
The challenges of homeschooling, however, can be considerable. The parents of a child with BTHS are usually working full-time to support and care for their child under normal circumstances; most parents have neither the expertise nor the time to be the primary educators for their children. Another challenge to the parents of a homeschooled child is how to offer him appropriate opportunities to socialize with peers. Homeschooling, while it presents many attractive solutions for the education of a child with BTHS, is not a simple solution. If parents are interested in exploring what homeschooling entails, they might visit the Homeschooling Community website. Learning Liftoff is another great website for homeschooling families.
One relatively new option that is worthy of consideration for a student with Barth syndrome (BTHS) is virtual school. For students in high school, internet academies offer the flexibility of homeschooling along with the expertise of professional educators. Furthermore, these educators do not have to come into the home as with home tutors, and the internet schooling experience is often especially geared towards students who work at different paces than students in regular classrooms. For instance, the Florida Virtual School (FLVS), which has been attended successfully by a student with BTHS, has the motto, “any time, any place, any path, any pace”. Florida residents do not have to pay to attend FLVS. The school does offer a global school with affordable tuition to students in all states and to students in more than 65 countries around the world.
Lastly, parents have the opportunity to develop creative solutions to educating their child with BTHS. The course of BTHS is different for each person. Sometimes they have periods of relatively good health, and sometimes, unfortunately, they have periods of extreme fatigue and illness. These periods can last for short or for prolonged amounts of time, so it can be difficult settle on one educational program throughout a student’s academic career.
The following are a few of the creative solutions that parents have come up with to educate their children who have BTHS:
Some parents homeschool their child and offer him the opportunity to socialize with peers through taking music and art courses in his regular school
Some students are homeschooled with an option to audit classes at a local public school
Some students have combined home schooling, hospital homebound tutoring with virtual school
Students can enroll in a public-school system on a part-time basis and supplement his education with internet-based classes
Ultimately, parents should think creatively and explore options when searching for the educational environment that best meets their child’s needs.
[i] Broughman SP, Swaim NL. Characteristics of Private Schools in the United States From the 2011 – 2012 Private School Universe Survey. US Department of Education.