If your child has a life-limiting illness, you want to do everything you can to ease the child’s pain and help them live fully in the time remaining to them. Lack of sleep, money worries, work pressures, the needs of other children, your spouse and relatives—everything has an effect on your ability to cope.
Have you considered calling hospice? Hospice can provide incredible support to you, your child and your family, but you may be reluctant to call because you feel it means you are giving up. But you really aren’t. Rather, you are getting support for your child and your family that will make everyone, especially your child, feel much better. Ask your doctor or social worker to call for you and make a referral if you’d rather not make the call yourself.
Although many hospices will provide care for children with a life-limiting illness, your child's doctor and the hospice medical director will evaluate the progression of your child’s illness and determine if the time is right for hospice. Your doctor and a hospice nurse will answer any questions you may have and tell you what to expect and what you can do to make your child more comfortable at this time.
Your health insurance may cover the same hospice services for a dependent child as it does for an adult. Talk with your health insurance representative. If you do not have health insurance, your child may be eligible for Medicaid coverage if he or she is a citizen or a lawfully admitted immigrant, even if you are not. Eligibility for children is based on the child's status, not the parents'. Also, if someone else's child lives with you, the child may be eligible even if you are not because your income and resources will not count for the child.
Always check with your local hospice about available services. Remember, it is a tradition of hospice to offer services based on need, rather than on the ability to pay.
NHPCO’s CaringInfo offers informational resources (available in English and Spanish) for parents and families of seriously ill children:
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