Families that have children with Myotonic Dystrophy will face special financial challenges. These challenges can be best separated into short term and long term needs. Short term needs will be day to day living expenses. Long Term goals are dealing with a child who may need to have individual care for a lifetime. Both of these needs are important. Lets review some options:
DAY TO DAY LIVING EXPENSES There are many medical bills that will challenge a family financially. This is when a good insurance policy will be needed. Families with CMyD will need to insure that they have a good medical plan. Because of the expenses with CMyD this is an overriding factor. Even with the best of policies not everything will be covered in these days of managed care in the USA. If both spouses are working and have coverage this is ideal. You should realize that in changing jobs your policy will change. You need to explore how much the medical program covers and to insure that the new program will cover your child. Some programs will exempt existing conditions. You will need to actively explore what other means are available to pay bills. Some options to explore are state programs, Shriners Hospitals, Medicare if qualified, Birth to 3 Programs when young, and alternative programs. It’s possible that your child may qualify for Supplemental Social Security Income (SSI) in the USA. Also some states have programs that will make cash payments to families that have disabled children.
LONG TERM FINANCIAL PLANNING: You need to analyze your financial situation. You need to insure that the family can survive if the breadwinner dies or becomes disabled. You may need to have additional life insurance. It’s more likely that a short term disability may occur over a few months or years. How will the family cope with this? A good disability policy is mandatory if this occurs. You also need to review life insurance. Term Life insurance is less expensive in the short term but increases in the long term. You may want to review universal life policies for each spouse. You will have to review your financial situation to determine what would be best for you. Check with your medical insurance carrier to see if the child would be covered after age 18. Some policies and states require that coverage be extended to family members with disabilities.
It helps if both spouses are working and able to achieve coverage. Companies change coverage from time to time. Make sure during this change that they will still cover your child long term. You may need to establish a special trust to insure that your disabled child will receive the benefits of an inheritance. Generally any assets the child has upon reaching age 18 will be tapped first for any governmental programs. This means that any money left to the child would be “seized” by the state to pay for basic care. Many parents have set up “special needs” trusts that allow the child to benefit from money you may leave. This needs to be carefully drafted by a specialist in this area. Other relatives that may leave money to the child such as grandparents and others and should be advised to leave money to the “trust” and not the child. If necessary, you will need to have a guardian named for your child if they are not competent upon reaching age eighteen. Some law firms that specialize in these coverage’s advertise in Exceptional Parent Magazine.