Intermountain Jewish News

WHEN Betty Lehman’s infant son Eli was diagnosed with autism 24 years ago, dreams of a normal life shattered into a million pieces — and she’s still putting them back together.

“One of the things that really made me grow up was having a child with extreme needs and a potentially terminal condition,” Lehman, former executive director of the Autism Society of Colorado, tells the Intermountain Jewish News.

“The level of responsibility is tremendous — and I had taken on a responsibility that was going to be with me for the rest of my life.”

Lehman’s marriage dissolved, leaving her in charge of her son’s care. Almost immediately she started worrying about what would happen to Eli if she died — despite the fact she was young and healthy.

And it terrified her.

“This has been on my mind since Eli was born,” she admits. “My son’s fate depends on me. It’s frightening to realize that something might happen to me; that I won’t always be around to be Eli’s defender and advocate.”

For parents of special needs children, daily existence is an all-consuming juggling act of emotional demands and practical destinations. Whether responding to and comforting sudden behavioral outbursts or taking kids to doctors, schools and developmental therapy, parents are locked in the moment.

“I always realized that I needed something that protected Eli financially for the rest of his life,” Lehman says.

“I consistently advocated for the necessity of wills and trusts and planning.”

While working in the disability field, she observed that parents were generally hesitant about arranging life care plans for children whose very future often depended on the good graces of others.

“These families don’t have a sense of urgency about the future,” Lehman says, “which I understand completely.

“They are so caught up in the present, just getting through each day, that a lot of this gets put on the back burner.

“In America, there’s a sense that the government is going to take care of me, and my disabled child, for life,” she says.

“This is a rather unenlightened view of how things really play out.”

This summer, Lehman and Melissa Edelman, a 25-year-veteran of the financial services and the only chartered special needs consultant in the West, launched Financial Alignment Partners.

The firm addresses financial and legal concerns of parents with special needs children and works with specialized professionals to create a viable future for disabled children in the their parents’ absence.

For the mother of a straight A high school senior, her paramount concern might hinge on whether her daughter is finally accepted into the most prestigious university.

“When you have ‘typical kids,’” Lehman says, “you can have a reasonable expectation that if they graduate high school and college, they’ll be able to take care of themselves.”

The predictable psychological journey of adolescents entails separation and individuation, hopefully with love. It’s a necessary step toward maturation, independence, and ultimately establishing a career and family.

Lehman’s experience was the antithesis.

“I still have the card my parents gave me on my 21st birthday,” she says. “It contained the William Blake quote, ‘No bird soars to high, if he soars with his own wings.’”

Autism cut Eli’s wings.

“When you’ve been caring for your child so intensely and so long, it’s impossible to envision a time when you’re no longer here,” Lehman says.

“My responsibility to Eli is to help him achieve as much independence as possible. And I know he will need more than government benefits to enjoy a good quality of life.

“It’s up to me to do everything possible to give him a reasonably comfortable life and make sure his guardians have enough funds to protect him from predators.”

Sadly, the only thing some parents dare hope for is that they live one day longer than their disabled child. In reality, that child will probably survive them.

“It’s overwhelming,’ Lehman acknowledges. “But you have to start somewhere.”

As executive director of the Autism Society of Colorado, Lehman helped pass 14 Colorado laws to support and protect thousands of children with disabilities. She also spearheaded the HIMAT law, which generates more than $100 million annually for the treatment of autism.

Melissa Edelman met Lehman through the Autism Society, where she also volunteered. “Betty stuck out,” she says. “She wasn’t just a mouthpiece for the organization. She was getting things done.”

Edelman approached her with the idea of starting a financial planning firm for parents of special needs children.

No one realizes more than Lehman that these over-extended caregivers lack the time and energy to investigate secure planning strategies for their children.

“It was a perfect match,” she says of the career move.

Lehman mentions her father, who sold insurance for New England Life while she was growing up in Kansas City. “It was the 1950s and 1960s, when the Ozzie and Harriet mentality ruled the day. The father was the breadwinner. The mom stayed home.

“When the breadwinner died, life insurance was the family’s only resource. People were always telling me how grateful they were to my dad.”