Ensuring a Future for Your Special Needs Child

A few months ago, Hi-Hope was contacted by Caroline Hampton of openeducators.org. Ms. Hampton describes herself as a parent and teacher who strives to promote cultural awareness through the power of information. She created openeducators.org as she is passionate about helping parents and teachers spread knowledge to their children. Ms. Hampton offered to author a blog piece and we took her up on that offer. While she focuses on children, we know that many of you are connected with larger communities of individuals with developmental disabilities and might be willing and able to help spread this information. Additionally, if any of our readership wishes to write a piece for Hi-Hope, please contact Nick at nreynolds@hihopecenter.org. The following is Ms. Hampton's submission:

Ensuring a Future for Your Special Needs Child

Every parent dreams of having their children grow up to be successful, happy, and fulfilled. But what if a child can’t grow up to be a fully independent adult, and insuring that success, happiness, and fulfillment is totally up to the parents?

Planning for the future of a special needs child is something no parent wants to be faced with, but planning ahead for the day when their care needs must be transferred to someone else is a critically important task.  There is no simple solution or one right answer for accomplishing this daunting task.  Knowing where to start is often the most difficult part, but here are a few tips to help guide you down the path that is right for you and your child.

Trust Your Instincts

As a parent, no one knows your child better than you do.  Don’t let anyone sell you on a one-size-fits-all solution based on your child’s diagnosis.  If the child is old enough and able to provide input into their future, asking for their input is the best way to ensure their long-term happiness. Before making a decision, make sure they know what options are available and they fully understand that you won’t be there with them

Explore The Options

While skilled nursing facilities have been around a long time, they definitely aren’t the only option available to your child. Other types of living arrangements include finding another relative for them to live with, or a variety of supportive or independent living options.  Depending on the level of care your child will need as an adult, they may be able to fully integrate into the community in a home of their own.  However, unless they will be living independently before you reach the point where you can no longer care for them, they may find that a supportive living arrangement is more comfortable.

Find Support

Finding information, and legal support can be challenging. Things like guardianship, trusts and other financial matters, power of attorney, wills, and the like need to be taken care of by lawyers and financial planners who specialize in planning for special needs clients.   While it is important for anyone to update these types of documents regularly, it is especially important to review and evaluate them regularly when the long-term care and well-being of another person is involved.

Consider Companionship

If your child has lived with you their entire life through whatever point in adulthood you are no longer their primary caregiver, the transition to life without you won’t be easy.  While we most often think of dogs when considering service animals, companion pets can come in many forms.  Consider options that will allow them to keep their pet, and possibly get another one (since animals generally have a much shorter lifespan than people) once they are separated from you. 

Regardless of how old your child is at this point, or where you are in terms of planning, the most important thing to remember is that planning for their future is an ongoing process.  As long as you start early, educate yourself, and stay diligent, you will have many opportunities to revise and refine the plan to ensure it adequately meets all their needs when you are no longer able to care for them.