Ask a Social Worker is a new monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
I am a parent of a child with a bleeding disorder. What should I be doing to help prepare my child to go back to school?
It’s hard to believe that it’s back-to-school time already! And, for many students and families, it’s a return to in-person learning after a year or more of virtual/distance learning.
If your child will be starting at a new school this year, it’s important to educate the school staff about your child’s bleeding disorder and how to best support your child in the event of an injury or bleeding episode at school. Even if your child is returning to the same school, it’s always a good idea to do a refresh with the school nurse.
Some families want to talk to school staff about their child’s bleeding disorder on their own, while others may feel more comfortable asking their hemophilia treatment center (HTC) team or their local National Hemophilia Foundation (NHF) chapter for help. Support could come in the form of a letter to the school, a phone call with the school nurse, or an in-person or virtual meeting with the school staff. Members of your HTC team or local NHF chapter would be happy to discuss opportunities for collaboration with your child’s school and your family.
You may have heard of 504 plans and IEPs, and you may be wondering what these mean and how these programs could help your child at school. Both 504 plans and IEPs (Individualized Education Programs) come from federal laws to help ensure that schoolchildren with special needs or disabilities in K-12 have the same chance of success at school as their peers without special needs. The laws require schools to provide appropriate accommodations and services to qualified students. A student with a bleeding disorder may qualify for either an IEP or a 504 plan.
Because of the challenges associated with bleeding disorders, kids may at times have difficulty keeping up academically and may not always be able to take part in the same activities as their classmates. Some accommodations that an IEP or 504 plan can support are: modifications to physical education, providing an elevator pass, preapproved nurse visits, excusing absences or lateness that occurs because of medical reasons, and providing a safe place to store factor.
The Steps for Living website is a great reference for families and school personnel looking for sample accommodation plans for children with bleeding disorders. If you are interested in learning more about these plans, you should speak with your HTC team and/or local NHF chapter and your child’s school to determine what assistance, if any, your child needs to be successful at school.
— Betsy Boegeman, MSW, LICSW, LADC
Boegeman works at the Children’s Minnesota Center for Bleeding and Clotting Disorders in Minneapolis. She is a member of the Social Work Working Group.
I am an adult with a bleeding disorder, and I am thinking about going back to school, but I don’t know how I can afford it. I also am unsure where to start or what questions I should ask, considering I have a bleeding disorder.
It can be overwhelming to think of returning to school as an adult, particularly if you are the first person in your family to go to college. Starting something new can always bring up a series of questions, fears and concerns. If you have interest in returning to school and are over the age of 19, connecting with your local hemophilia treatment center (HTC) or National Hemophilia Foundation (NHF) chapter social worker can be a first good step in creating a plan to go back to school. Many scholarships and school resources are state specific, and the local social worker can be a wonderful resource to help streamline the process and obtain resources to assist you along the way.
There are also national and state partnership programs that can be of service in planning and returning to school for someone with a bleeding disorder:
- Educational Opportunity Centers (EOCs) are programs for nontraditional students that are sponsored by the U.S. Department of Education at colleges, universities and technical schools throughout the country. EOCs can support a student in many ways leading up to and throughout their academic career. Prior to admission, an EOC can help an applicant with SAT/GEDs and other entrance exams. Once admitted, a student can get assistance with financial aid, workshops on career development and personal counseling with the goal of removing barriers to graduation.
- Vocational Rehabilitation is a program administered through state agencies that supports people with disabilities who wish to return to school or work. Many of the agencies have broad definitions of disability and include physical conditions and chronic medical conditions in their programs. Vocational rehabilitation offers a variety of funding for school/work and rehabilitation counseling to assist a person with training, assistance with entrance to colleges and universities, and work readiness programs. Most of the agencies have income requirements and the local office can determine eligibility for the program. Find your local vocational rehabilitation program and explore your eligibility.
Hemophilia scholarships are also available throughout the country to help students pay for education. The NHF provides a directory of scholarship and application information for people with bleeding disorders.
Education after high school provides a wide range of benefits. Studies show that people who obtain postsecondary education have greater financial stability, increased career choice, and access to employer-based insurance plans. Connect with your local HTC or NHF chapter social worker for more information and ideas on how to create a plan that will work for you.
—Christi Humphrey, LCSW
Humphrey works at Hemophilia of Georgia in Atlanta. She is a member of the Social Work Working Group.