Advocacy In a Nutshell

Advocacy In a Nutshell

January 02, 2018

What happens when you are no longer around to care for your disabled child?  As you get older, this question becomes increasing relevant and, for many parents, a serious problem.

If you are elderly and your child has been living at home, the question as to who will care for your child can become extremely stressful.  How will your special needs child cope with your death or disability and a transition to a different living arrangement at the same time?

Alternatively, for aging parents who have been successful in obtaining placement for their child in a group home setting or in a self-directed program, there are still other questions to be answered.

  • Is the person who you’ve appointed as the standby guardian able to effectively advocate for your loved one?
  • How do you create and maintain an effective team of caregivers and professionals for your loved one after you’re gone?
  • What happens when your child’s needs are not being met?
  • Have you established the communication pathways with the team members who are taking care of your child?
  • Do you have a method of maintaining records of documents and electronic communication between you and the agency operating the group home?
  • Has your standby guardian attended some of the ISP meetings so that they have met the team members and understand the process?
  • If you have a Special Needs Trust, will your designated trustee have the time and ability to advocate, or will that be someone else? If so, who?

As the organizations which operate the group homes and provide the services come under increasing financial pressure from New York State and the federal government, your child will need a strong advocate with an appropriately funded Special Needs Trust if he or she is to have the full life that you want for them.

You are your child’s greatest resource.  Plan for your disabled child’s future now.  As Abraham Lincoln said, “You cannot escape the responsibility of tomorrow by evading it today.”