SPECIAL NEEDS PLANNING: Who will watch over my special needs child as they age when I am not able?
For parents of a child with special needs many questions arise as the child becomes an adult: Will they be able to live independently? Will they have an adequate and dignified place to live? Will they be able to pay their own bills? Who will watch over my child to ensure their needs are met?
If you have come to the realization of life-long dependence for your child, planning for their transition into adulthood will go a long way to ease your mind. Before your child turns 18-years-old, becoming an adult, it is important to plan for who will make decisions on their behalf if they are not able. Consult with an attorney to discuss whether assigning an agent with power of attorney or establishing a court conservatorship is appropriate.
Who can be assigned as a decision maker?
Parents are the likeliest chosen decision makers. The usual recommendation is to select one parent primarily and the other parent as an alternate. Both parents may be assigned as co-conservators if your adult child does not have capacity.
The usual recommendation when planning is to include a succession plan in the event you become unavailable, incapacitated, or die. You may consider including a close responsible adult as an alternate. Whoever is selected they must be over 18 years of age, and be willing to serve in this role.
The qualities of a person best suited to act as a decision maker for a person with special needs is someone who will act in the best interest of the person, separate from their own interests. They must be trustworthy and capable as a strong advocate navigating and adapting the plan of care as the person ages. They must have the knowledge necessary to preserve the person’s public benefits and prudently manage their finances. Direct service providers or their employees may not serve in this role.
There are professionals who specialize in this area who can help you plan, manage services, and advocate for your adult child’s best interest.
How will I know when it’s time to seek help?
Planning for your inability to serve as your child’s decision maker is wise. The loss of your ability or willingness to manage important things isn’t likely to be black and white or happen overnight. As time progresses and the realities of aging become known, you as a parent may find yourself less-willing or less-able to manage everything for your adult child. Maybe you are feeling it is best to be busy in your own lives or you want to help your adult child become less dependent on you.
The need for less dependency or a less restrictive arrangement may become apparent. You may choose to step-back somewhat to provide your adult child the tools or resources which will be available to them as you become less available. Arranging for your adult child to live outside of your home with the necessary supports will be important to do before long. Finding an appropriate living arrangement along with navigating the maze of resources and public benefits, can be managed by a professional. You might consider involving a licensed professional fiduciary to help with the transition between your adult child being your dependent, to your adult child living independent of you.
What can a licensed professional fiduciary do to help the transition?
Licensed professional fiduciaries provide critical services to help protect and maintain quality of life for vulnerable people. When it comes to people with special needs, some professional fiduciaries who specialize can identify critical needs, manage a person’s publicly provided services, protect their public benefits, and consult with doctors and attorneys as necessary.
A Licensed professional fiduciary can open an *ABLE Act account on behalf of a person and serve as the legal representative managing the account.
A licensed professional fiduciary can also serve as a consultant, or as agent for power of attorney for health care and/or for finances. They can also serve as a court appointed conservator for a person with special needs under a limited conservatorship. Some fiduciaries specialize in serving as either health care agent or finance agent as trustee.
In California, fiduciaries are licensed and regulated by the state of California’s Professional Fiduciary Bureau under the Department of Consumer Affairs. You can learn about the high standards and stringent requirements licensed professional fiduciaries are held to by visiting their website at www.fiduciary.ca.gov.
*You can learn more about the ABLE Act by visiting www.ablenrc.org.
Lori Cochrane is a local, licensed professional fiduciary specializing in all matters of the person. She practices a person-first-and-centered philosophy as a special needs and health care advocate. She earned her B.A. in Behavioral Psychology and her Master’s Degree in Special Education from CSU, Sacramento. She is a professional member of the National Guardianship Association, Professional Fiduciary Association of California, The Arc of California, and the Placer County BAR Association. She has been helping families during times of difficulty and transitions since 2000. Lori can be reached at 916-705-7309 or Lori@CochraneCSS.com.