Getting help for
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases
In-home services provide skilled loving care for your child and much needed respite. It is OK to ask for help. You can't take care of anyone else unless you take care of yourself.
Here are a few tips for getting outside help.
1. What does your insurance cover?
Review your insurance coverage to learn what in-home services are covered. Talk to your case manager. If coverage is limited ask your case manager about giving up coverage for services you are unlikely to need in exchange for services you do need.
To obtain a case manager, speak with your insurance company. Your case manager will become familiar with your child's particular medical needs and help you navigate the insurance policy to get the best coverage possible. It will also save you from having to explain the diagnosis repeatedly when calling the insurance company for coverage information.
2. Talk to the treating physician
Discuss in-home service needs with the treating physician. Ask for referrals and letter of medical necessity which will help with insurance coverage.
3. Consider palliative and hospice care
Pediatric palliative and hospice are wonderful resources for in-home services and does not limit life extending care options. Learn more about other common pediatric hospice myths. Palliative & Hospice Care
Medicaid varies by state but many offer coverage for in-home care. Medicaid Waiver programs by-pass the waiting period and are often based on the diagnosis rather than the family income level. Medicaid can be used as secondary insurance to primary private coverage. Learn more at https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Waivers.html
Also read pages 7-9 of the NTSAD Home Care Manual