Current Funding Needs:
Parent Support Program
Blythedale frequently serves low-income families from the New York metropolitan region, particularly the Bronx, and almost 70% of inpatients’ families are enrolled in Medicaid. We encounter many families who are living in or near poverty, as well as several families each year who are homeless. Even in the best of circumstances, a child’s hospitalization can put an enormous strain on a family. This ordeal can be even more stressful and damaging for a low-income family that relies on public transportation, that often lacks the resources for basic necessities such as food and clothing, that may be confronting other serious issues within the family such as unemployment, who have other family members with physical and/or mental health problems, and that resides in poor communities where daily living is itself an ongoing challenge.
During their children’s admission, caregivers for these families are typically under strain to maintain employment, provide for their other children (who may also have medical needs or disabilities), and make many trips to Blythedale over periods of months to participate in their child’s recovery, attend conferences, and receive training. Moreover, these families are often headed by single mothers. Parents may be unable to pay for medical equipment, like wheelchair ramps or special bathing devices, that is not covered by insurance but which they’ll need when their child is ready to be discharged home. For these very needy, challenged, and traumatized families, Blythedale offers a range of supports and services through our Parent Support Program to reduce their stress, facilitate increased involvement in their child’s care, and improve their family functioning.
Services provided include:
- Advocating for the family with a variety of hospital and community systems and training parents to self-advocate following discharge.
- Coordinating transportation and travel subsidies to promote parent involvement in care.
- Accessing special funds to acquire non-reimbursable medical equipment and other items.
- Engaging with school districts to ensure continuity in the child’s education.
- Facilitating the family’s short-term stay in our onsite Family Housing unit.
- Offering weekly parent support groups and classes, such as yoga and meditation, to help alleviate stress and provide emotional support to caregivers.
Funding Priority: Clinical Research
Blythedale Children’s Hospital is committed to improving the health and quality of life of children with complex medical needs. An important area of growth for achieving this mission is clinical research, which is a natural extension of our commitment to children and our culture of innovative clinical and multi-disciplinary care. Over the next decade, we intend to build a robust clinical research center dedicated to advancing knowledge in pediatric neurorehabilitation – that is, examining the interrelationship between the brain, central nervous system (CNS), and mobility, and how we can target areas of this complex system to improve functioning beyond the limitations that were formerly assumed.
Hospital researchers are engaged in select research studies that affect the lives of children and make significant contributions to the practice and delivery of pediatric medicine. A recent highlight was our study, in collaboration with MIT, of the efficacy of robot-aided therapy in children with brain injuries that focused on recovery of mobility in the arm and wrist. Ours was the first randomized controlled study of this type of physical therapy in children.
Another recent project identified factors predicating success in weaning children from mechanical ventilation. The study involved an examination of pulmonary outcomes in collaboration with five other children’s hospitals with pediatric rehabilitation services, and an examination of the factors identified as predictors of success on weaning children from mechanical ventilation. Results were very promising: 96% of children remained free of ventilation; half were in school with 86% receiving therapy.
Examples of other research undertaken by Blythedale are studies of:
- motor functioning in children with cerebral palsy wearing neoprene or plastic garments to provide trunk support;
- comparing the use of gel and foam padding in the bracing used by neuromuscular-impaired children;
- the long-term outcomes of patients having femoral resection for hip pain.
Blythedale’s long-term goal is to become a research center of national repute in the field of neurorehabilitation. The vast majority of our patients have injuries to their CNS that impair function, yet children’s brains are also "plastic” – they are still growing and developing. Data from diverse areas of neuroscience have shown that the CNS reorganizes itself with activity and that we are able to positively influence this reorganization with various modalities that include medications, repetitive forced use of affected extremities, and mild electrical stimulation to the brain that is non-invasive and painless (known as "transcranial stimulation”). There is tremendous opportunity to advance the science of neurorehabilitation and learn about the complex interactions of neurological systems within the brain in the process of recovery, and there is potential for dramatic improvements in outcomes. Improved motor function may have an effect on the ability of a child to explore his world and thus may influence cognitive development.