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Struggling to find needed services and coverage

The Examiner

I need to get on my disability soapbox. I’ve been trying to calm down, since November.

In order to write this column, I had to do a little research first. The more I learned, the sicker I got. By December, I thought I was going to blow a gasket. But I made it to today, and I believe I am composed enough to tell the story.

Diane Mack

Years ago, when I was searching for life insurance for my special-needs daughter Kelsey, I learned that Kelsey could only apply for term life insurance.

For those who don’t know, there are two types of life insurance. Term life insurance lasts for a set period, and whole life insurance lasts as long as you keep paying premiums. In addition, the whole policy has a cash value.

Those are the magic words, cash value.

Because of Kelsey’s eligibility for disability and public assistance of any kind, Kelsey cannot have a lot of income or financial resources. There are special needs trusts that can help with this. However, today, I am not going to address those trusts.

When a person with a disability is on SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), state Medicaid, or a Medicaid waiver (long-term disability care), the individual is on a slippery slope when it comes to any increase in income or financial resource. Those individuals, like my daughter, rely on government services and income to eat, dress and live. These programs are lifelines.

During the past two decades, I’ve heard the new moms often mention how hard it is to get their child on SSI and Medicaid. Those government programs open the door to the essential and necessary supports for a child with disabilities.

My daughter was approved for SSI in the ’70s. However, today it’s not as easy to get onto SSI, even when a qualifying disability is evident from birth.

I can’t get started on the Social Security office and the 50-person line of disabled applicants.

Prior to the special-needs child turning 18, their eligibility for SSI, Medicaid, etc., is contingent upon the parents’ income and the family size. Nevertheless, once the adult becomes eligible for SSI and Medicaid the child must walk a fine line.

Six years ago Kelsey set up a business called The Birds’ Nest. The Birds’ Nest Store allowed special-needs individuals to sell their homemade items and make a little money.

When I called the state of Missouri to ask what amount the individual could make without the income affecting their SSI, the state employee reported “$85/month.”

Here are the neediest, the poor, those with multiple disabilities, who are truly unable to work, and we are limiting them to making only $85 a month.

Well I’ve gone off topic. It’s so easy for me. Let me get back to last November’s issue.

Wouldn’t you think it might be simple to procure life insurance to cover a special-needs child’s funeral costs?

Of course, the insurance company has to consider the child’s medical condition, and perhaps rate the policy.

It made me very sad that the two insurance companies I trusted the most reported back, “We can’t help you.”

Therefore, I asked a few parents to apply for life insurance for their child.

Are you ready? All but one agent turned them down. In fact, some agents heard the word disability and said, “We don’t offer coverage.”

Can insurance companies do that to these dear children? How does the song go? Insurance companies should love “the little children. All the children of the world, red and yellow, black and white, they are precious in his sight ...”

Well, I got out my advocacy pen and started to appeal. In fact, I reviewed each insurance company’s policies, their advertisements and their websites.

Most of them actually advertised life insurance coverage for special-needs persons.

Well, I am appealing to the insurance agents of the world.

Are there any agents out there who can offer life insurance to a child or adult with disabilities?

Thanks for listening.            

Diane Mack is coordinator of Putting Families First, Jackson County's Family Week Foundation. Email her at Director@jacksoncountyfamilyweek.org.