3 | Six Ways to Find and Give Support as a Special Needs Caregiver

This episode is a solo one, and host Jenny Olson is saying out loud some of the things she thought for years that she believed were just her. If you are a special needs parent or caregiver who has ever felt alone, misunderstood, or like no one else gets it, this episode is for you. We talk about grieving the future you once pictured for your child, even while loving them exactly as they are. Jenny opens up about getting tired of hearing it will get easier, and what it is really like when there is no empty nest coming for families like ours. We also cover feeling resentment and guilt at the same time, watching friendships fade as life gets busier with caregiving, and lying awake at night wondering who will care for your child when you are gone. She shares thoughts on how the world seems built for families with young kids with special needs, but offers very little for adults with special needs, along with the complicated feelings that come from watching other people’s kids hit typical milestones. Lastly, we talk about losing touch with your own hobbies and identity outside of being a caregiver, and why it is okay to still take up space as your own person. If you are a special needs parent or caregiver of an adult with disabilities looking for connection, community, and honest conversation about guardianship, caregiving, and adult disability life, she hope this episode reminds you that you are not alone.

On today’s episode, host Jenny Olson is sharing the things she would never do as she planned for her special needs son’s 18th birthday. If you have a special needs teenager who is 16, 17, or about to turn 18, this episode is packed with practical tips to help you avoid common mistakes. We talk about why you should never wait to look into guardianship, power of attorney, conservatorship, or supported decision making, and why it is best to start that process at least a year before your child turns 18. She also shares why you should never open a regular bank account in your special needs child’s name with a lot of money in it, and why an ABLE account or special needs trust is a much safer option. We also cover why you should never forget to apply for Medicaid and SSI right after your child turns 18, since those benefits are the gateway to things like Medicaid waivers and paid caregiving. And finally, Jenny reminds you why you should never forget why you are doing all of this in the first place. If you are a special needs parent or caregiver trying to make sense of guardianship, Medicaid, Social Security, or SSI as your child approaches adulthood, this episode will help you feel more prepared and less alone.

Today we’re talking with Haley Bennett, a mom of 4 whose younger two kids, ages 18 and 17, have profound autism, apraxia, mitochondrial issues, and several other complex health conditions. Haley shares how she found the Speller program after hearing about the book Underestimated, and how spelling to communicate opened up a whole new world for her non speaking children. We talk about apraxia, presuming competence, and why a child who cannot reliably communicate may know so much more than anyone realizes.

For this episode, I’m sharing several things I have learned after being a special needs parent for 18 years to my son Ben, who has autism and an intellectual disability. If you are a parent of a child with special needs, or a caregiver of an adult with disabilities, this episode is full of honest reflections that I hope will encourage you. We talk about how high school graduation is not really a finish line, but the start of a whole new chapter. I also share why turning 18 does not mean your child suddenly needs less help or support, even though they are a legal adult. We talk about why it is so important to look into adult disability services and benefits like Medicaid, guardianship, ABLE accounts, and Social Security or SSI before and after your child turns 18. I also open up about learning to trust myself instead of constantly worrying, planning for my son’s future care after I am gone, and why setting up things like a special needs trust and organizing important documents really matters. Lastly, I talk about why taking care of myself as a caregiver is just as important as taking care of my son. If you are a special needs parent or family caregiver looking for encouragement, real talk, and practical tips for navigating guardianship, Medicaid waivers, and adult disability care, this episode is for you.

We’ll be walking you through how I became a paid caregiver for my own adult son who has autism and an intellectual disability. If you have ever wondered if you can get paid to take care of your adult child with special needs, this episode is for you. I share the exact steps I took here in Colorado to become a paid family caregiver through Medicaid waivers, but this information can help you no matter what state you live in since many states have similar programs. We cover what paid family caregiving actually is, how Medicaid and HCBS waivers work, and the difference between self directed care, also called CDASS, and agency directed care, also known as PASA. I also break down the different types of waivers, including the SLS waiver, the CFC waiver, and the Children’s waiver, and explain why we chose the path we did for our son. You will hear about the process of interviewing caregiving agencies, what homemaker hours and personal care hours are, how much you can expect to get paid, and what training like CPR and mandated reporter classes are required. I also share info on which states have strong consumer directed models, which states allow parents of minors to be paid caregivers, and where you can start your own research no matter where you live. If you are a special needs parent or caregiver wondering about guardianship, Medicaid waivers, or how to get paid to care for your loved one, this episode is packed with real, honest information to help you get started.