Meet Betty Lehman | Disability Advisor and Advocate

We had the good fortune of connecting with Betty Lehman and we’ve shared our conversation below.

Hi Betty, what role has risk played in your life or career?

Taking risks is easier when you have nothing to lose and everything to gain.

One of the risks I took over and over, and still do, is not to focus my interactions on being “likeable”.

I focus on being respected for being reliable, committed, and truthful instead of saying and doing what is popular.

Many years ago, when I was a well-known advocacy figure at Colorado’s State Capitol, a highly paid lobbyist told me, “Betty, people here not only respect you, they fear you!” They feared me because, at that time, I was not afraid of them!

My beau at the time was Senate Majority Leader, Ken Gordon. He said, “When you think people are screwing you, you go nuts.” I responded, “No, when I think they are screwing people with intellectual and developmental disabilities (IDD), I go nuts!” “Going nuts” was never popular, but it was, at that time, often effective.

My size was always an advantage because it is not expected that a small, petite, older Mom would be fearless and relentless – and “go nuts”.

When it comes to advocacy for my community, I play to win. We need champions in the IDD world.

Today, I often tell prospective clients that I am not everyone’s “cup of tea”. Not everyone enjoys the uninhibited directness of my communication style.

I feel in my heart I am a truth-teller. Speaking truth to power or to clients is more important to me than being popular.

And speaking the truth when truth matters is a risk I will always be willing to take. Being truthful when it matters beats the heck out of being popular.

Social impact: how does your business help the community or the world?

I coach people with family members who, due to disabling conditions, need some or a lot of lifetime care support. The question we must answer is, “Who will take care of our loved ones when we can no longer act on their behalf?”

Most people don’t want to talk about – let alone create a plan for – the end of their life. Nor do many people want to think about emergencies such as unexpected hospitalization due to Covid. However, if you are a caregiving or managing parent of a child or an adult child who needs ongoing reliable supports and services for their lifetimes, not having an emergencies plan is irresponsible and can result in irreversible harm. In my experience, the parents who don’t want to plan are also the parents who lie awake at night worrying about the future.

I am not talking about legal planning, like wills and trusts. I am talking about an emergency plan to provide the demanding 24/7 line of sight support for protective oversight and care. Who will manage the benefits and provide the resources for their child’s or adult child’s care needs? Who will manage the household? Who will earn and manage the money? Who will manage their child’s medical care? Who will make certain their child has social and recreational opportunities? Who will be a friend to and fight for their child’s rights? That information is not in a will or a trust.

Partly because emergencies and end of life are taboo discussion subjects in today’s American culture, it is estimated that more than 90% of parents of children with severe autism have no plan in place on how to replace themselves as caregivers if something bad happens to them. Another reason they don’t plan is they don’t know how to do this type of planning.

I promise you there is no jinx that happens if a lifecare plan is created – planning for the future does not lead to death any more than buying car insurance causes you to have an accident.

So, what happens when there’s no plan? Various outcomes can occur, however, quality of life for the disabled person is not usually the first consideration for decisions about managing their life when a parent is gone. Just finding anyone – think “warm body” – willing to accept the often low pay and challenging work to fill the now empty management and caregiver role is how this often plays out.

Just in case you are wondering, there’s no “place” for people with disabilities that is staffed with warm-hearted, competent caregivers. America has a direct caregiver shortage that is staggering. We also have an affordable housing crisis. The scarcity combination leaves people with disabilities who are unable to effectively advocate for themselves in crisis.

One of my business and personal goals is to help people and systems overcome the taboo on discussing emergencies and end of life. Especially when our children depend on us to have a plan. Vulnerable children and adults do need other people to step up for them when parents can’t act.

There are valuable quotes relevant to my work. One of my favorites is from Scott Page in his book, “It’s Never Too Late”:
“…the hardcore truth is that we all have an expiration date on our mortality…
we have three choices on how to handle that reality…
• we can deny it,
• we can ignore it,
• or we can plan for it”.

For people with disabilities, if there’s a solid plan about the ways and means to have their needs met for their entire lifetimes, that changes their world and our world. Realistic lifecare planning for people with disabilities and their families is a game-changer for everyone.

Any places to eat or things to do that you can share with our readers? If they have a friend visiting town, what are some spots they could take them to?
All my besties dine at Chez Betty’s. I live in a pretty setting. My patio is on a pond – perfect for drinks and apps. I love to cook for my friends. I make certain what I offer fits their diets and preferences.

Every year I travel to Cottonwood Hot Springs to stay in one of their cabins. Using that base, I hike and explore every day in the Collegiate Range and beyond in addition to soaking and relaxing. I always take a friend and my son. We call it going to Camp.

In the summer, I often provide presentations for parents of children with disabilities at Adam’s Camp based at Snow Mountain Ranch, Granby. I stay in nearby Hot Sulphur Springs at the Ute Trail Motel. The hospitality at The Ute is heart-warming.

Denver is like an adult fairy land: music, parks, State parks, dining, vistas – we have it all – and usually have great weather to accompany our fun times!

The Shoutout series is all about recognizing that our success and where we are in life is at least somewhat thanks to the efforts, support, mentorship, love and encouragement of others. So is there someone that you want to dedicate your shoutout to?
The person who deserves a great amount of credit in my story is my son, Eli.

Eli was diagnosed as a child with 36 medical conditions and severe developmental disabilities, Many doctors pronounced him terminal. Nothing about his childhood was normal.

Not only did Eli not die, he worked his heart and soul out every day to live. And not just live, but thrive!

Today, Eli is 34 years old, he has a job that he loves, he works out every day to stay healthy, and he is happy.

Eli taught me what really matters in our lives: patience, compassion, realistic expectations and promise-keeping.

Website: www.lehmandp.com + www.adan.net

Linkedin: https://www.linkedin.com/in/betty-lehman-218b681/

Image Credits
JK Studios