1. Set up a will: You must consult with an attorney who specializes in disability planning for this endeavor. Be sure to appoint a guardian and standby guardian for your child in your will. You don't want the courts appointing one for your child in the event that something should happen to you and your child's other parent. Your will must be set up with special instructions for any moneys your child may inherit or life insurance policy payouts he or she may receive to be deposited into a Special Needs Trust Fund.
2. Set up a Special Needs Trust Fund: You'll need to hire an attorney to set this up for you as well. Leaving money or assets to your special needs child can be tricky. It is of the utmost importance that this be set up correctly!! You don't want to jeopardize your child's government disability entitlements such as SSI or Medicaid by leaving them money or property improperly.
3. Petition the courts for guardianship of your child: Until any child is 18, his parents are considered by the courts to be his legal guardians. Once he turns 18 however, that is no longer the case. Regardless if your child has a disability or special need, once your child turns 18, the court will assume that your he or she is an adult as well. The whole process of petitioning the courts for guardianship absolutely must be completed BEFORE your child turns 18, because the second he turns 18 it will be assumed that he is a responsible adult, capable of making his own decisions. It is highly possible that if you find yourself in an emergency situation after your child turns 18, you are not his legal guardian, and it is determined that your child is not capable of making his own decisions, that a temporary guardian could be appointed by the courts to make decisions for him, regardless you, the parent's wishes!
4. Apply for special needs government financial entitlements: There are many government financial resources available to qualifying individuals with disabilities. In the US we have Supplemental Security Income or SSI which provides a monthly income to children and adults with disabilities who cannot work. You can apply for SSI at any time in your child's life, but until they are 18 their parents income will count in determining their eligibility. Once your child turns 18 however, parents income no longer counts and most individuals are determined to be eligible. Most states also have Medicaid Waivers available. Children or adults with significant disabilities and medical costs are usually eligible for this government medical insurance program. Parents income doesn't count in determining eligibilty. Some states even have a Home of Your Own Program that helps individuals with disabilities buy and maintain their own homes Your child may also be eligible for food stamps and funds for heating their home.
5. Apply for special needs services: Your child may be eligible for another service that is available in most communities called the Home and Community Based Waiver. This service offers case managers or service coordinators to assist in ensuring that your child is receiving all the help that is available to him such as: respite workers, home health aides, home health nurses, community habilitation workers, job coaches, community transportation, gym memberships, hippotherapy, music therapy, art therapy. etc.
6. Decide where your child with live after you are gone: Where would you like your child to live after you are gone? There a a few options to choose from, including but not limited to: living with a sibling, in a group home, in a supported apartment, in a shared apartment with other disabled individuals, or in their own home with live-in staff.
7. Write a letter of intent: This is a letter for your child's future guardians intended to let them know how you'd like your child's life to be after you're gone. It should include where you want your child to live, community activities your child would like to continue participating in, your child's place of worship, your child's friends, favorite foods, favorite activities, and all medical information. I know it can be heartbreaking for parents of a precious, beloved child with disabilities to think about the time when they will no longer be there to love, care for, and protect them, but with a little careful planning and making a few informed, well thought out decisions you can achieve a measure of peace knowing that you have planned and provided for your child as much as is humanly possible!