August 15

Does Your Child With Special Needs and Their Caregivers Have a Circle of Support?

Every parent and every child need a support network to help them achieve their goals and live their best lives, but for parents of children with special needs – no matter their age – the worries of who will take care of your child now and in the future take on heightened significance. Your child may need support for the rest of their life, even after you have become incapacitated or have died.

As parents of a child with special needs, you also require your own level of support for your personal, physical, and emotional needs, as well as resources to help you make financial or educational decisions for yourself and your child. 

To ensure your child with special needs is always cared for without interruption or delay, and to make sure you and future caregivers have the support you need to take care of yourself and your child, it’s important to establish a group of family members, friends, and professionals that I call your Circle of Support.

Creating Your Circle of Support and Fiduciary Manual

Whatever your child’s special needs may be, carefully creating and preparing a Circle of Support is an important component of holistic Special Needs Planning. As your Personal Family Lawyer®, I can assist you with this process through our Circle of Support and Fiduciary Manual, and provide you with methods for selecting your future caregivers and fiduciaries–the people you have entrusted with using your assets to support your child in the event of your incapacity or death–and beginning to educate them on their role in your child’s life. 

Your fiduciaries include your Attorney-in-Fact under a Power of Attorney, the Trustee of your Revocable Living Trust, and the Trustee of your child’s Special Needs Trust. Each of these legal instruments provides guidance to the fiduciary, but many important details of your child’s needs will change over time. 

The Manual is the place to record these details – and update them annually as needed. Details that you should record in your Fiduciary Manual include the names and contact information of your child’s doctors, tax preparer, counselor, and healthcare providers, to name a few.

Of course, some adult children with special needs can handle many of these matters themselves, so some sections of your manual will provide guidance on trustworthy financial and tax advisors or an annual reminder of emergency and disaster procedures. 

Sections on your hopes for their future education and employment will be meaningful to your child in certain seasons of life, and the steps you share of your own decision-making processes may remind them at a critical moment of the values you strived to uphold during your lifetime that you hope they will embody in theirs.

Upon its completion, you will have a plan in place for everything from who handles disability redeterminations and driver’s license renewals to who changes the air filters in your child’s home, how often, and what type of filter to use. 

The Manual also serves as a guide for your fiduciaries on how you would like them to manage your assets and your child’s care at different stages of their life.

Putting Your Circle of Support Into Action

Your fiduciaries themselves may need support and input from a variety of sources as your child grows, and this is where the Circle of Support steps in. At least annually, it is a good idea for trusted family members, friends, and professionals to come together and assess how well-supported the individual with special needs has been during the preceding year, what adjustments should be made, and what improvements could be gained in the coming year to help the individual thrive.

I often suggest that parents start holding informal Circle of Support meetings every 1-3 years while they are still alive and healthy. As parents, you can develop blind spots to your child’s needs, and meeting with your Circle of Support can bring these gaps to light. Far more likely, your own needs can easily be forgotten while caring for a child with special needs, and making sure you’re getting the care and support you need is equally important to your child’s ability to thrive.

Who is caring for the caregiver (you!) right now, and who will look after the well-being of future caregivers and fiduciaries as they support your child?  As your Personal Family Lawyer ® with a Special Needs Planning Focus, I can help you answer these questions and more, so you can rest assured there is a plan in place for your child’s care at every stage of their life.

Completing Your Circle of Support With Your Lawyer for Life

Being the parent and caregiver of a child with special needs is a rewarding experience that works best when you and your child have a network of support and a documented plan and team. 

Whether your family elects supported decision-making or your child requires a conservatorship – and whether you have named family members or professional fiduciaries – I am committed to helping you record your wishes and your fiduciaries’ information, store it securely in a location known by future fiduciaries, and pass it along the moment it is needed.

Any bit of data and wisdom that you have gleaned over your lifetime that you include in your Fiduciary Manual could be a crucial component that serves to craft your child’s future and helps them thrive. To learn how to receive a fillable .pdf or Word version of the Manual to get started, or if you haven’t yet taken that first step to begin your family’s special needs planning journey, reach out to me, your Personal Family Lawyer® with a Special Needs Focus. 

My goal is to ensure your child experiences continuous, consistent support throughout their lifetime in order to live their best life and I would be glad to share more about how we can work together to achieve that goal for your child and your family. Schedule a free call with me today to learn more.

This article is a service of  a Personal Family Lawyer® Firm. We don’t just draft documents; we ensure you make informed and empowered decisions about life and death, for yourself and the people you love. That's why we offer a Family Wealth Planning Session™, during which you will get more financially organized than you’ve ever been before and make all the best choices for the people you love. You can begin by calling our office today to schedule a Family Wealth Planning Session.

The content is sourced from Personal Family Lawyer® for use by Personal Family Lawyer® firms, a source believed to be providing accurate information. This material was created for educational and informational purposes only and is not intended as ERISA, tax, legal, or investment advice. If you are seeking legal advice specific to your needs, such advice services must be obtained on your own separate from this educational material.

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