Many parents of children with special needs do not expect their special child to ever be financially independent. These parents also know that they are likely to die before their child. However, many of these parents have not made a will or completed other plans for their child’s future without them. Where will the child live when the parents die? Who will take care of the child? Where will the money come from?
Special needs can range from disabilities readily identified such as physical challenges, through various mental, social, and emotional disorders. The parent with a special needs child lies awake at night wondering who will care for the child. These parents face many challenges – they research and seek out medical care, advocate for the best educational setting, search our financial assistance for the many expenses they face, and deal with their other children, spouses and family members – not to mention holding down a job. Planning for care options if they predecease the child often falls to the bottom of the list.
In some families, parents make arrangements with the siblings of the child to take over the responsibility. Sometimes, the siblings simply can’t take over, or don’t want to. It can be a huge responsibility and financial burden to someone who has a family of his or her own to care for.
Even for parents who think their other children will take care of their special child, they must make a will, create a trust for the benefit of the special child, and set funds aside. Funds intended for the special needs child’s care should not be given to siblings with vague instructions “to take care of” the special needs sibling.
While the services available through government benefit programs are substantial, especially with regard to medical care, actual cash benefits are generally quite small. The special needs child lives below the poverty level and does not have enough funds for basic needs. For an individual with a disability to live comfortably and respectably, family members or charitable organizations have to help.
One of the key factors in planning for the care of a child with special needs is to make sure that government benefits remain available to the child, while supplemental needs can be provided for privately. Future posts will address special needs trusts, sometimes called supplemental needs trusts – a kind of trust used to preserve access to government benefits while funding additional needs for the child. These trusts are the cornerstone of a plan for a special needs child.
You need to have the basics taken care of. It is important to make a will that appoints a guardian for the child if he or she is a minor and that includes a trust for the child that will allow them to continue to receive government benefits.
Select a person to be a trustee to manage the funds you set aside for the child. Make sure there is a back up in case the person you selected cannot serve.
Also make sure that you have a power of attorney for financial matters and a medical directive. If your special needs child is 18 years of age or older and has the capacity, you should make sure the child also has a power of attorney and medical directive.
Having this basic plan in place will go a long way to making sure your child is cared for. The basic plan can be improved and refined, but it is the foundation for everything you do to plan your child’s future.
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