Raising your child with special needs who will require lifelong support can be overwhelming, especially when you need to plan for them long term. There are legal and financial matters to consider, your child’s individual needs, and the effect all your decisions will have on everyone else in the family. And the costs associated with raising your child with a disability like autism, Down syndrome, cerebral palsy, or epilepsy are colossal. So what is the best way to go about financial planning for your child with special needs?
Financial analysts now predict that raising a child to age 18 costs upwards of $250,000. Parents of children with disabilities and special needs incur costs as much as ten times greater. According to Autism Speaks, raising a child with autism costs on average $60,000 a year. A severely autistic child can have medical bills that exceed this amount, with a lifetime expense of over $3 million.
Even if you have health insurance, you can spend hundreds of thousands of dollars on out-of-pocket fees associated with equipment, medication, and care for your child, depending on the diagnosis. Some disabilities are more costly than others. These payments may continue once he or she becomes an adult and plans for who will oversee his or her care after you’re gone will be important.
Reflecting on these thoughts might make you hesitate with fear and anxiety. But the act of creating a plan can ease these tensions. A plan will give you peace of mind since some of the issues you need to confront are financial: How do you set aside money for your child without affecting his or her government benefits? And some are emotional: Who would understand your child’s needs if something were to happen to you right now?
The following is a quick list of steps for financial planning for your child’s future. Some are simple, some are challenging; some cost nothing and some require paying legal fees. Regardless, if you get started on these now, you’ll feel calmer and more in control.
Take an inventory of the access you have to equipment or financial benefits that you and your child will need. Consider what potential government assistance you and your family may be eligible for, based on income and the nature of your child’s disability.
There are different programs throughout the state of California. At the state level there is a Medical program for health insurance and Social Security disability, as well as In-Home Supportive Services (IHSS). It’s important to take stock of what options may be available to you while also identifying what additional care you want to provide for your child that will not be covered.
It’s never too early to plan for your child when he or she reaches adulthood, so start envisioning what it will look like as soon as you can.
Is your child interested in, and able to attain, post-secondary education? Will he be able to work and earn a supplementary income? Will your child be able to live independently? If not, what types of living arrangements are available? Consider what estate planning you already have in place, such as a will or trust, for when you are no longer around to care for your child.
Consulting with a professional well-versed in special needs financial planning can also help you avoid potentially costly mistakes, as well as make you aware of available programs.
That includes an attorney, doctor, accountant, and government benefits specialist to help understand the ins and outs of Social Security, Medical, IHSS, and other programs.
Special needs require unique planning. If you feel overwhelmed and you need help, please contact us.
American Advocacy Group is on the front lines every day, making positive change happen for people diagnosed with Autism, Down syndrome, and a range of diagnoses across the continuum. As a leading advocate for all people with intellectual and developmental disabilities and their families, and the premier provider of the support and services people want and need, we understand the system and know how to take action in regard to your best interests.
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