WHEN Betty Lehmans infant son Eli was diagnosed with autism 24 years ago, dreams of a normal life shattered into a million pieces and shes 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.
Lehmans marriage dissolved, leaving her in charge of her sons 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 sons fate depends on me. Its frightening to realize that something might happen to me; that I wont always be around to be Elis 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 dont 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, theres 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, theyll be able to take care of themselves.
The predictable psychological journey of adolescents entails separation and individuation, hopefully with love. Its a necessary step toward maturation, independence, and ultimately establishing a career and family.
Lehmans 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 Elis wings.
When youve been caring for your child so intensely and so long, its impossible to envision a time when youre 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.
Its 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.
Its 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 wasnt 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 familys only resource. People were always telling me how grateful they were to my dad.
ACCORDING to surveys cited by Lehman, 88% of parents with disabled children have not set up a trust to guarantee the eligibility of government benefits, and 90% have done no advanced planning at all.
A special needs trust, also called a supplemental needs trust, ensures that the special needs child will retain guaranteed government benefits yet still have adequate funds to cover additional needs once the parents are deceased.
Specific provisions in the trust must comply with Colorado Medicaid-approved language stating that the disabled person will never have access to this fund.
A disabled individual over 18 can own a house, a car, and have less than $2,000 in the bank and still qualify for government benefits. Any assets above this may disqualify him from receiving other benefits, including Medicaid.
Parents put money into the special needs trust, which Lehman describes as a quality of life fund that supplements items not covered by the government. These are things you and I would take for granted movies, a haircut, a bicycle, nice clothes, hiking.
After the parents death, a trustee assumes control of the trust.
Lehman describes guardianship as an interesting conundrum of which shes acutely aware.
Im a single parent of an autistic son, she says. Eli doesnt have brothers or sisters. I dont have a family who knows my son or could step in as a guardian. And Im not alone in this.
Who is going to be your childs sentinel? Who is going to stand up for him, advocate for him, fight for and protect him?
Even parents who have healthy children should never assume that they will accept the awesome responsibility of caring for a disabled sibling.
Kids grow up, Lehman says. They might move to another state, start careers and families of their own. And when the parents die, they might not want to give everything up and move back to Colorado.
Guardianship is more complicated than people realize. Its not as simple as saying, Oh, Im sure your brother or sister will take care of you. Maybe they will. But its not an easy role to assume. So what do you do?
Contemplate all the possibilities. Talk openly and honestly with family and friends. Act in the best interest of the child and do it now.
Dont expect the government to step in and care for your kids, because it wont, Lehman says.
LEHMAN encourages parents of special needs children to write a letter of intent, a non-legally binding document that instructs trustees, guardians and attorneys about their childs affinities and dislikes.
The LOI answers questions relating to health, well being, medical background, needs, tastes, preferences (hates ice cream, loves French fries) the tiny details that comprise the essence of a human being.
Cognizant that the majority of parents have not written letters of intent, Financial Alignment Partners offers workshops on crafting these instructions.
Taking care of a disabled child is a full-time commitment. In a two-parent family, usually only one parent is able to work. For the majority of single parents, income is negligible.
In either case there is no wiggle room for a lengthy nap, let alone incapacitating illnesses or accidents.
A special needs child requires constant supervision. Unless you are well off, you are that supervisor.
Caregiving is extremely stressful and difficult, says Lehman. We generally have a 70% higher risk of developing a serious health problem.
Expenses that arent covered by insurance can exact a damaging monetary toll, especially when there are other children in the household.
Its not unusual for siblings of a special needs child to feel neglected or unloved, particularly when their future dreams hang in the balance.
So often parents focus more on the child with special needs, Lehman says. Its not because parents dont love their other kids. Its just that the situation presents itself that way. Parents dont think about preparing for retirement or setting up college funds. Everything they have goes into this one child.
Lehman emphasizes that life care planning must encompass the entire family.
Its very important that the family, as a holistic unit, be considered, she says. Its not about one member of the family. Its about the whole family.
As for parents who are so drained they are unable to function, Lehman offers an analogy that applies to the personal and financial spheres:
You have to put on your oxygen mask first, because you cant help your disabled child or your healthy children if you go down with the ship.
WHEN the doctors told Lehman that Eli was autistic, she was stunned, bewildered and momentarily paralyzed. This was so much bigger than anything I ever imagined happening in my life.
Through the Autism Society, and now at Financial Alignment Partners, Lehman uses a honed instinct to help struggling parents reach a point where they can breathe a sigh of relief. When people visit us, a transference occurs, she says. They no longer feel alone. We take it on. Every time I sit down with someone, Im able to come up with resources in the here and now that will make things better.
Today Eli is participating in an active life within proscribed boundaries. Mother and son are as tight as ever. A single photograph communicates the depth and joy of their relationship.
2012 was Elis best year, Lehman wrote in a holiday letter to friends. Except for his preferred diet of French fries and chocolate, he is beginning to determine his own choices. He shines with happiness.
Now, with an adult in tow, Eli enjoys industrious days of volunteer work and exercise, meal preparation and cleaning, and man about town activities like shopping, theater, museums, and occasionally socializing at his day program. He is an able and a vital person.
I can finally envision our future living contentedly apart.
Although Lehman is in the private sector, she still views herself as an advocate for the most vulnerable members of society and the parents who love them.
We give parents options, a place to start, she says. They can walk away feeling they have tried doing the best for their child. And theres something very comforting about knowing that you are doing the best you can do.
Copyright © 2013 by the Intermountain Jewish News