Information We Wish We Had Known
Some of our loved ones have been living with SLC13A5 Epilepsy for over a decade. In that time, we have discovered information and resources we wish we had known from the beginning. We hope this section will help ease your journey.
RESOURCES FOR FAMILIES MANAGING DEVELOPMENTAL & EPILEPTIC ENCEPHALOPATHIES
A few external resources that may be helpful are:
- 24/7 Epilepsy Hotline. The Epilepsy Foundation has a 24/7 Hotline in both English & Spanish. Information specialists are trained in helping you find resources in your local community. You can also use their searchable directory to find local resources in your area here.
- The Epilepsy Foundation’s Developmental & Epileptic Encephalopathies (DEEs) educational program overviews DEE challenges, evaluation, health-care teams, and resources.
- DEE-P Connections is a website that shares critical resources for families who struggle with Developmental & Epileptic Encephalopathies (DEEs).
Education for infanthood through adulthood may be a challenge for those with SLC13A5 Epilepsy. It is important to familiarize yourself with the resources in your state from early on. In addition to therapies and services described above, your loved one may be entitled to an Individualized Education Plan (IEP) under the Individuals with Disabilities Education Act (IDEA). To help, we encourage you to listen to a webinar to learn more about IEPs for children with severe epilepsy here. It is important to know your federal and state legal rights in school and child care, and we provide some resources on that here. To find state-specific services, we recommend the following links:
- Ages 0-3: Early Intervention for ages 0-3. The CDC maintains a list for services by state.
- Ages 3-5: Preschool Education, e.g., “Committee of Special Preschool Education” (CPSE)
- Ages 5-21+: Special Education, e.g., “Committee on Special Education” (CSE). You can search for your state’s Special Education Agency.
NURSING, PEDIATRIC HOSPICE, & PALLIATIVE CARE
Nursing, pediatric hospice, or palliative care can be helpful to families with loved ones whose conditions are considered life-threatening. Death does not need to be imminent for these care teams to be involved in your loved one’s well-being. Pediatric hospice is quite different from adult hospice because it can be provided along with treatments meant to cure. It can begin at any age and at any stage of an illness. Such programs often provide much needed support for families, including assistance in coordinating care across many providers. They can even assist with managing prescriptions and insurance appeals. Palliative care benefits both the loved one and their family by focusing on efforts to relieve the symptoms, pain, and emotional wear-and-tear that makes managing a complex medical condition so difficult for the loved one and their family. For a guide to pediatric hospice care provided by the American Academy of Pediatrics, visit the Healthy Children’s website.
Respite care is planned care or emergency care that is provided to a loved one with special needs in order to provide temporary relief to family caregivers who are caring for that loved one. Caring for a person with serious disabilities is often stressful, so being able to take some time off may be invaluable. For more information about how to find and choose respite care services, visit ARCH National Respite Network and Resource Center.
TRANSITIONING FROM PEDIATRIC TO ADULT CARE
Making the transition from pediatric to adult care for loved ones with SLC13A5 Epilepsy can be a big challenge. There are many steps to take well in advance of your child turning 18. In the United States (US), you can enroll your child in your state’s Prioritization of Urgency of Need for Services (PUNS) list through the local Department of Family & Children Services.
Caring for a loved one with a complex medical condition can be both confusing and costly. There are national and state programs that can help. It is important to be aware that some benefits are age-based and eligibility may change over time. Researching options in advance to ensure no deadlines are missed will be an important part of your journey.
- Insurance. There are many types of insurance – both government and private – to help with medical expenses. An overview of types of coverage and additional resources are here.
- Medicaid Waivers. If your loved one with a disability is uninsured, needs additional services, or needs wrap-around Medicaid coverage to help with finances and uncovered services, your loved one may need a Medicaid waiver or program. These programs “waive” one or more Medicaid rules in order to extend eligibility and/or services to children. For children, the most common rule to be waived is the way income is calculated, meaning the waiver is based on the child’s income instead of on the family’s income. The Katie Beckett Medicaid Waiver (or the Home & Community Based Waiver or HCBW) or TEFRA (the Tax Equity and Fiscal Responsibility Act) gives states the option to extend Medicaid to children with severe disabilities by only counting the income of the child with a disability and not the income of their parents. For additional information on these and other financial programs, visit here.
- State-Based Programs for Children with Special Health. Every state has at least one parent training and information center that specializes in navigating specific support programs for you and your child, such as parent-to-parent financial programs in your state and local area. Additionally, Title V is a partnership with the State Maternal and Child Health program and the Children with Special Health Care Needs program. Search the Internet with the name of your state plus “services for children and youth with special health needs” to find state-specific support.
- Patient Assistance. Some non-profit organizations and pharmaceutical companies also offer patient assistance to obtain medications, as well as patient travel assistance to access medical care and other resources. Check with your local Epilepsy Foundation to learn about the patient assistance that might be available in your area.
TRANSPORTATION ASSISTANCE FOR MEDICAL CARE
Angel Flight NE is a 501(c)(3) nonprofit organization that coordinates free air and ground transportation for medically stable patients seeking medical care for healthcare conditions including rare and ultra-rare diseases that requires patients to travel hundreds if not thousands of miles for the specialized care they need.
Their mission is made possible through the generosity of volunteer pilots and commercial aviation partners who fly medically stable children and adults for free. They have been providing this service for 27 years, assisting more than 108,000 patients who have flown over 15 million miles to 750+ medical facilities throughout the United States. They also provide services to patients who need to travel internationally to receive specialized care. You can watch a recent video that features some of the patients they have assisted here.