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Preparing for a Lifetime of Caregiving for Children With Disabilities

Preparing for a Lifetime of Caregiving for Children With Disabilities

From the time your child was diagnosed, you’ve probably worried about financially supporting her, ensuring that she gets the assistance she needs, and taking care of her for the rest of her life. Raising children with disabilities requires planning — no one knows that better than you do. Can you successfully raise, care for, and plan for the future of your child, all while maintaining your caregiver health and a healthy work/life balance? The prospect may seem impossible, but by choosing the right team to support you as you raise your child, planning for the future won’t be so overwhelming.

Financial Preparations
Special needs trusts are often the best choice for families who have children with disabilities, according to the American Bar Association. With certain trusts, the money held counts as an asset for the child, and having more than $2,000 in assets may prevent him from being eligible to receive Medicaid, Supplemental Security Income, or other government benefits. However, in special needs trusts, money isn’t counted toward the $2,000 limit. These trusts are typically funded by the parent’s assets and may allow for the parent to seek government aid outside of the trust. Often, money can be funneled through the living trust for ongoing care costs. Even after a parent’s death, the trust can be used to pay for her child’s care.

An experienced financial adviser can help you set up a trust for your child, determine how best to fund it, and set financial goals that will ensure his financial future. In addition to setting up a trust, your adviser can assist you with your will and other estate-planning topics.

Legal Considerations
In many cases, you’ll need an attorney to help you establish a special needs trust. If not, you may still want to consult one for financial and guardianship provisions in your will. You’ll want to find a lawyer who frequently works with families caring for children with disabilities. The Special Needs Alliance can help you locate a lawyer in your area who works closely with the type of legal issues you may face.

If a child with disabilities can’t support herself and live independently after she turns 18, she will need a legal guardian who can make medical, financial, and other decisions on her behalf. Your attorney will help you set up alternative legal guardianship provisions, making absolutely certain that your child’s future is secure.

Ensuring Work/Life Balance
A strong support system is the key to ensuring that you don’t burn out. The emotional toll of raising a child with disabilities can be damaging to your physical, mental, and emotional health. Contact your local hospital to ask about any support groups it operates, and research programs in your community. Organizations such as The Arc of the United States work actively to connect families, enhance resources, and advocate for all people with disabilities in your area.

The legal and financial planning required to raise children with disabilities can feel overwhelming. Some of the pressure, however, can be easily relieved by enlisting the help of an experienced financial planner and lawyer. This, in combination with a strong support system, can ease your stress as a caregiver — and allow you more quality time with your child.

 

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