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The single most important issue on the mind of a special needs caregiver, regardless of the age of the dependent, is what will happen to my dependent after I'm gone? Who's going to look after my dependent's best interests? Who's going to step into my shoes? Will my dependent be happy, healthy and secure?
Every family is unique and planning will vary. But what is common for everyone is the importance to plan, and most importantly plan correctly and update periodically.
I'm sure you have heard that it takes a village to raise a child. The same is true for special needs planning. To do this you will need to build a team of experts.
The team should consist of people who are experienced in planning for a person with a disability, including a special needs financial advisor, special needs attorney, advocacy organizations, etc.
It is important to know that family members and friends can all take an active role in the planning process; i.e. grandparents, aunts, uncles, siblings, and friends. Invite family/friends over for a meeting to discuss the roles you would like for them to take on in your dependent's future; what the role entails, and most importantly discuss if they are willing to take on the role. Involving family and friends with the planning process can help lessen the emotional, legal, and financial issues they may face once they take on the new role, and also provide assurance for caregivers, as well as family members and friends.
National non-profit organizations have local offices all over the country and are a great free resource for information about your loved one's diagnosis, support groups, and even possible services your dependent may benefit from. Contact a non-profit organization to find out if there is a local chapter in your area. You can also contact your state and local government agencies to obtain a list of resources.