116: What are the Life Stages of a Special Needs Person?

You may have heard the sentiment that parenting is one of the most challenging yet most rewarding jobs there is. That is even more true when raising a child with special needs because they often come with unique challenges. It’s easy to quickly become overwhelmed mentally, emotionally, and even financially and physically at times. Your sense of normalcy may seem different from others around you, leading you to feel isolated and alone, unsure of what to do or where to turn.

To help provide some answers, we sat down with Kerrie Lloyd, Vice President at Index Fund Advisors, author of Planning the Future for A Special Needs Child, and founder of Integrative Solution Services LLC, where she provides consulting and collaborative tools to the special needs community. Kerrie is also a Doctor of Natural Health, NhD, and earned her certification in Pivotal Response Therapy for Autism through the Koegel Autism Center at UC Santa Barbara (now at Stanford University). She also earned her Chartered Special Needs Consultant (ChSNC®)* designation in 2020 through The American College for Financial Services, a fully accredited institution by the Middle States Commission of Higher Education.

Despite all the accolades, Kerrie’s most important job is as Adam’s mom. Adam was diagnosed with Autism and Deafness early on, and through her experiences with him, she has learned what it takes to raise and care for a special needs child. Kerrie noticed that special needs children go through a series of life stages, each marked by major events, such as diagnosis, the beginning of school, and the transition to adulthood. Having this knowledge makes it easier to prepare for each stage, eliminating the fear of the unknown for parents. Now that Kerrie is in the later stages with Adam, she has compiled her experiences and resources to share this insight and knowledge with others.

In this episode of Absolute Trust Talk, we will discuss:

  • The six stages of life for an individual with special needs.
  • The key planning components and milestones that mark each of the stages.
  • What the transitions from each phase look like.
  • Important resources that are available and how to access them.
  • The importance of obtaining legal help to ensure that parents understand their rights, know what they can ask for, and ensure that they aren’t missing any steps.

And much more.

It can be difficult to navigate life’s complexities with a special needs child, but you don’t have to go through it alone. Understanding these life stages can help you better understand your child, feel more prepared for each milestone, and even unlock enriching and fulfilling moments.

Big Three from Episode #116:

  1. Regardless of the stage of life that your special needs child is in, the key to getting what’s best for you and your child is advocacy. Through the years, you’ll likely meet with professionals in education, medical, and legal fields, and they may provide suggestions and recommendations, but at the end of the day, you, the parent, know your child best. Speaking up and advocating for your child’s needs is necessary to ensure they get the right support.
  2. Knowing how to plan ahead, yet also being able to adapt to change are skills that are important for all people to have, but for those with special needs children, they are even more crucial. Each life stage brings new challenges as behaviors, environments, and circumstances change. And as Kerrie points out, these transitions are vital because they help demonstrate if a plan is working.
  3. Kerrie’s number one tip is to work with experts as much as possible to help ensure that you understand your rights and choices, that you’re filling out the correct paperwork, maintaining access to all the right resources, and able to provide the best quality of life possible.

Time-stamped Show Notes:

0:00 Introduction

2:42 To kick this show off, we’re introducing Kerrie and learning more about her background and how her son Adam is the driving force behind her work in the special needs realm.

4:16 In her book, Kerrie breaks individualized support needs into six life stages to help readers focus on what needs to be done during each phase.

5:16 The first life stage is typically the first three years of life. It can be a confusing time for parents, but there are programs and resources to help you.

7:40 In stage two, the elementary school years, your child is introduced to new environments, and you gain access to different educational planning resources.

10:20 Next, Kerrie shares more information about the types of support available, ranging from physical therapy, occupational therapy, and speech therapy to behavior management.

12:04 It’s crucial to engage a lawyer so families are clear on their entitlements, what to ask for, what they should expect in the process, and ensure that they aren’t asking too much.

12:41 Up next is Stage 3. This is a time of significant transition where families see if the child is progressing – if the collaboration and consistency across environments are working.

15:38 Stage 4 is the high school stage, and special needs children may go through similar changes as neurotypical kids. Listen in as Kerrie shares more on navigating this growing independence period.

18:12 Stage 5, when your special needs child reaches the age of adulthood, can be a confusing time because there are lots of legal questions that must be addressed. Here’s what you need to know.

21:28 If you are divorced with a special needs child, you may wonder what happens to child support after the child turns 18 with limited conservatorship. One of the best options Kerrie has seen is having a parent contribute to an ABLE account or a special needs trust.

23:11 The last life stage is when the child transitions out of school, and you’re trying to navigate what will happen “forever” – a life care plan. This can be tricky because the child might not understand why school is ending.

28:14 Because special needs individuals require additional support, it’s important to have a plan for long-term care. Join us in a mental exercise, “Imagine a World…”

33:25 Q&A: Should you shop your school district before your child is of school age since the school district provides many services for your child?

36:17 Q&A: What are some good resources for a family with a newly diagnosed child (aside from Kerrie’s book, of course)?

38:41 Kerrie will be at the National Guardianship Association Conference at Disney. If you’re there, stop by for a free book!

Get in Touch with Kerrie Lloyd
Vice President, Institutional Consultant
Index Fund Advisors
19200 Von Karman Avenue
Suite 150
Irvine, CA 92612

Resources/Links Mentioned in this Episode:

[Ad] Calling all neighbors in the Walnut Creek area and beyond! At Absolute Trust Counsel, we understand how unique the needs of your family can be. When it comes to planning for your family’s legacy, there is no one-size-fits-all approach. Schedule a free discovery call,and let’s talk about how we can help build the right plan for your family’s circumstances. Or, if you have a question about the content in this blog, please feel free to get in touch with us by calling 925.943.2740 or sending an email to Info@AbsoluteTrustCounsel.com.

A person with special needs has their own unique needs, and their estate plan should reflect that, but it can come with its fair share of challenges that must be carefully thought out. By visiting https://absolutetrustcounsel.com/special-needs-tools/, you’ll find various tools, tips, and information to help protect and support the person with special needs for years to come.