June 2024: Meet The Need NC e-News

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish.

We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

Caregivers Share Their Experiences, Hope and Fears

This month, we welcome two guest authors who are strong advocates and are also caregivers for a member of their family: Betsy MacMichael and Marjorie Serralles-Russell.

Message from Betsy MacMichael

Our disability community is hanging on by a thread in a human service system marked by notable shortages.

For 32 years I’ve given my all supporting our daughter Janie through all her life stages thus far. It’s like a signature project that my husband and I must do right … Because there is no choice when you love someone so deeply.

How am I? Chronically worried.

We’ve done the homework, we’ve acted, there isn’t much more we can do to plan for her life without us. She’s in the best situation we or she can imagine. But it’s not sustainable and here’s why. Supported Living as a service, with Self-Direction as a specific approach, has ensured most of her shifts are consistently filled with staff who understand that she (and I) are the boss. In the past, when using Supported Living but not Self-Direction, we went weeks between staff. If we died tomorrow, I know no one who would do Self-Direction, an unpaid part-time job. Her staff would take immediate pay cuts of around 40% and likely leave, exacerbating the crisis.

With this precarious reality, people must have specific “what if” plans in their ISPs (Individual Support Plan) for when caregivers are no longer available to help.

For people on the waitlist, we need care managers and others to have and use existing tools to help families begin to plan for the future.

Sudden crisis management is not efficient nor cheap. And it’s scary.

Our daughter is so amazing, while there are so many things she doesn’t understand. In fact we’ve been told through the years that she is functioning and performing above her IQ level. What does that even mean? What does it say about our system, if where and how people learn and live is driven by the lowest expectations based upon their assessed skills? What does that say about the belief that lots of people can’t live in the community? I don’t accept it. At First In Families (FIF) of NC we have seen and believe that there is no conscious person incapable of relationship. Behavior is communication, and we need to listen better.

With expectations of competence and opportunities for self-determined lives, many more people could be directly involved in their communities, not just those exceptional lucky folks deemed supposedly “less severe” or who managed to get a waiver slot. I’m not saying it’s the only way to live, but it’s got to be the default.

In summary, I’m still going strong, but it’s exhausting. I live in fear over sustainability, frustration that progress is so slow, and a certain guilt and sadness that so many families are suffering without services.

Thankfully, great people in positions of leadership are working hard and creatively to right the wrongs. The thing is, until we get the waitlist under control, we are in deep trouble. The DSP (Direct Support Professional) shortage must not be an excuse for not eliminating the waitlist. Tweaks and small increases in slots feel truly like rearranging the deck chairs on the Titanic.

About the author: Betsy MacMichael is the executive director of First In Families (FIF) of NC, Community Co-Chair of NC’s Olmstead Plan Stakeholder Advisory Group, and parent to an adult with I/DD. She has worked to promote self-determination, inclusion and positive community awareness for the past 30 years, personally and professionally. FIF helps families and individuals avoid and manage crises, identify goals and dreams, contribute to community life, and plan for the future. Betsy holds a Master’s Degree, lives in Durham, NC and has two daughters, one with I/DD who lives with a housemate in an inclusive neighborhood in Durham, NC.

Message from Marjorie Serralles-Russell

I’m Marjorie Serralles-Russell and I serve as the Policy Education Chair of the North Carolina Council on Developmental Disabilities.

My son Spencer is 24 years old and lives at home with my husband and me. Spencer is an autistic young man waiting for services he desperately needs.

Spencer aged out of high school in June 2022 and being on the Innovations Waiting List, it has been a challenging time because there’s a sharp service cliff caused by students exiting school-based services to a very limited adult service system. While Spencer is on this waiting list, he is supposed to be receiving “SOME” partial services, but the REALITY is these services don’t get accessed due to providers saying they cannot find qualified Direct Support Professionals (DSPs) to provide the support.

For the times we have had the opportunity to access these partial services, we, as parents, identified the DSP for the provider agency. Nonetheless, the DSPs experienced delays from the provider training AND most recently the DSP had a four week delay in receiving their pay. So, the DSP did not stay for long.

Last month, I called our LME (local management agency) to check where Spencer stood on the waitlist. I learned that slots from November 2012 were currently being filled. Really! Slots from 12 years ago and Spencer has been on the waitlist for 7 years!

By the way, this wait list has existed for decades. So I ask: When is the disability community going to have their issues prioritized?

Meanwhile, Spencer IS experiencing significant regression.

He has no friends.
He retreats to his room and isolates himself.
He has gained significant weight.

In August 2023, we received the Eligibility Determination letter for 1915(i) services, and we have had care management services in place for over a year. Yet, Spencer basically has had two hours per week of Supported Employment services, which is NO different than he had more than a year ago. But hours have been spent creating and updating plans.

We are experiencing all of this WHILE we – the parents – are around. What is going to happen when we are no longer here? Spencer’s dad is 80 and he is extremely hands-on with Spencer BUT who is going to do what we do when we are gone?

As older parents, there is not a night that passes without worrying about how Spencer is going to be able to live. I know I am not alone with these FEARS.

About the author: Marjorie Serralles-Russell was born in Mexico City and grew up in Miami, Florida. She has a background in business, strategic planning and acquisition work. She is an attorney with an MBA and CPA. Marjorie has lived in Charlotte for 24 years. Her daughter is 25 and her son is 24. Marjorie has been involved in various non-profit organizations. She has been a Council member since 2020.