Family Members' Experiences: Context for Understanding and Interacting
K-12 Education
- School system required to provide appropriate assessment of a student suspected of having a disability upon written request of parent/guardian.
- School system required to develop an annual plan (IEP or 504) for the child's education in consultation with the parents/guardians. This plan is a binding legal document.
- Professionals embedded within the school system to provide the services and supports spelled out in the plan.
- Locus of accountability for child's performance is with the school system.
- School bureaucracy challenging to navigate at best, frequently obstructive, sometimes antagonistic.
- Family member probably has had prior negative experiences with teachers/other educational authorities and has established strategies and behaviors based in part on these experiences.
- Family member may have invested extensive time and effort securing services for the student and/or compensating for inadequate services by working with the student directly themselves.
- Family members are frequently not familiar with the significant differences in the laws, services, and culture regarding students with disabilities in the K-12 versus college environments. Consider reviewing the K-12 to College Transition Information packet, particularly page 3, with parents, guardians, and/or students to clarify matters.
Family Life
- Regular interactions with various professionals (social workers, medical doctors and staff, physical/occupational/speech therapists, mental health professionals, various specialists)
- Perhaps many hours researching the student's disability, treatments , and management strategies
- Perhaps many hours over and above regular parenting duties caring for the student directly and coordinating (or repairing lack of coordination among) above-mentioned education and/or health professionals
- Increased strain on family and friend relationships (for example, divorce rates for parents of children with disabilities are conservatively estimated at 70%)
- Increased isolation because child's needs limit opportunities for social contact (lack of physical accessibility in environments beyond home and school limits family outings; child's limited communication abilities increase dependence on family members; child's behaviors difficult to manage in unfamiliar environments; etc.)
- Increased financial burden due to lost work time caring for child, increased medical expenses for child and caregiver, legal battles for services, etc. (lifetime cost for care of a child with severe disabilities estimated at 2 million dollars)
- Repeating, ongoing cycle of crisis points in managing child's physical and/or mental health
- High stress levels
- High fatigue levels from physical demands of caregiving and/or chronic sleep disruption
Snapshop
As parents of a school-age child with cerebral palsy, I and my spouse monitor a 25-30 page IEP with 10-15 educational goals (varies by year), interact with 5-15 school and health professionals each week (phone calls, emails, and meetings), and provide direct physical care 35-40 hours per week over and above regular parenting duties. We coordinate services for our child from eight primary agencies or institutions, five funding sources, and 30-35 ongoing individual service providers. We also both work full time and are raising two children.
Material provided for information purposes only. For legal advice, consult a legal professional.