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This is What Parents of Children with Special Needs Can Do to Plan for the Future

An aspiring young writer, Jenny Wise asked to write an article for this blog. In her writing, Jenny shares her compassion and understanding of children with severe disabilities. I know you will appreciate what Jenny has to offer.

Parents of children with special needs understand more than anyone else just how important it is to plan for the future. These parents cannot afford to put off creating a plan to ensure their children will be cared for when they no longer can do it themselves. You may not be able to care personally for your child forever, but you can make sure the right people do.

  1. Keep Detailed Records

Keep all of your special needs child’s records up-to-date. Create a file containing your child’s medical history, previous and current medications, surgeries and procedures, therapies, and doctor histories in a secure location in your home and in a safe deposit box or in your lawyer’s office.

Other information to include in your detailed records is your child’s date and place of birth, social security number, Medicare number, birth certificate, insurance policies, and emergency contacts. Include the essential details and err on the side of caution rather than leaving out details that a future caregiver will need to know. These detailed records will be invaluable in the event that you or your partner cannot answer questions about your child.

  1. Do Estate Planning Sooner, Rather than Later

Regardless of how much money you have or how much property you own, you need to take care of your estate planning sooner, rather than later. Meet with an attorney who specializes in planning for children with special needs so you can ensure your child is protected. While the process takes some time and organization, it is essential to complete it as soon as possible to make sure your child is cared for and receives the benefits to which she is entitled.

While you may want to leave an inheritance to your child with special needs, you should avoid doing so. Giving money to children with special needs can make them ineligible for certain benefits. The solution is to create a special-needs trust in your will. This trust will improve your child’s quality of life without affecting her eligibility for government programs that provide food, clothing, and shelter; rather, trust money will provide for travel, entertainment, and recreation.

There are four steps you should follow when creating a special needs trust:

  1. Write a letter of intent – The letter of intent includes instructions for whomever you name as your child’s caregiver, whether it is an individual or a facility.

  2. Name a trustee – The trustee will oversee the money in the trust and be responsible for investing it and paying for your child’s needs. Most people choose a family member, but you may retain an attorney or a non-profit to serve as the trustee.

  3. Fund the trust – Set up your special-needs trust as part of your will and arrange for assets to go into it. You also can secure a life insurance policy and name the trust as the beneficiary.

  4. Determine how to invest the money – The trustee manages the money in the trust, but you can leave instructions for how to invest the money.

  5. Understand the Differences Between Guardians/Conservators and Caregivers

Parents should name a legal guardian for their minor children in their last will and testament. This guardian may or may not be the trustee of the special-needs trust. If the guardian you appoint cannot handle making decisions for your child, the court will conduct a legal proceeding to name a conservator. The conservator will make the decisions, and your child will be protected because the court will oversee the conservatee.

Caregivers, on the other hand, do not need to handle any financial decisions or other matters for your child. You have several options for care for your special needs child, especially as she becomes an adult child. You may choose a family caregiver, health-care aides, special-care facility, day program, or group home. You will need to work with your attorney to state your caregiving wishes for your child in your absence and to plan for payment for the caregiver.

You can secure protection and care for your child far into the future if you start taking steps to do so now. By keeping detailed records, completing estate planning, and knowing the difference between guardians/conservators and caregivers, you will put your child with special needs in the best position possible.


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