Parenting a Child With a Disability and Honest Communication – Do You Ever Get Sad?

We were ready for a weekend away. A team of moms had gone out of town to do a presentation at a conference. For a few of the ladies, it was the first time away from home and needless to say, they were a bit apprehensive about leaving their family.

For one mom in particular, there was a concern for her son who had Autism and a seizure disorder. He had not had a seizure in over a year so she was confident that he wouldn’t have one while she was away. At the same time, she was anxious of the chance that he would have one while she was away. She carried most of the responsibility for matters related to her son’s health and she didn’t want her husband to feel stressed if a seizure did occur.

On the last day of the conference she received a call from home. The worry in her voice told us that something was wrong. Her husband called to let her know that indeed, their son had a grand mal seizure. With patient expertise, she guided him on what to do until she returned home the next day.

We could sense her grief and she expressed her feelings of guilt and remorse for not being home when it happened.

A couple of days after our return home I called the family to see how their son was doing. Mom was out with one of her other children so I spoke to dad. He said that his son was slowly feeling better however he was very tired and lethargic.

Then he said, “Can I ask you a question?”.

“Of course”, I responded.

“Do you ever get sad?”, he asked.

“Sad?”, I repeated.

“Yes, do you ever get down or depressed?”, he inquired.

“Well, I feel helpless when my son is ill and I do get sad sometimes, yes.”

“Okay”, he replied, “Because last night I didn’t feel like eating dinner. Everyone was asking me what was wrong but I figured that they should know what was wrong. My eight-year-old son has Autism and he had to have a lot of medication because of a seizure. Now he can’t walk and for a few days, I have to carry him around.”

“To me, that’s very sad”, he explained. “I got up from the table and went to rest in my room and now everyone is upset with me.”

“Did you tell them why you were sad?” I asked.

“No”, he replied. “My wife has enough to worry about and I didn’t want to upset her any further.”

This was a defining moment in our conversation.

“Can I offer you my point of view, a wife’s perspective?” I asked.

“Sure”, he said.

“I know that you want to protect your wife’s feelings by not telling her how you feel because you don’t want to create additional stress for her. “

“That’s right”, he affirmed.

“When we don’t communicate our feelings and we emotionally withdraw, we can actually cause more stress and anxiety for our loved ones. It creates tension and misunderstanding. You may leave them wondering if it was something they said or did that is causing your grief and unhappiness.”

“Oh”, he replied. “I never thought of that.”

“We may feel vulnerable and exposed when we have candid conversations, however, it is important to be open and honest so that we can understand each other’s perspective. That is how we learn and flourish in our relationships.”, I offered.

“Otherwise strain and hostility may grow, putting the relationship at risk.”

“That makes sense”, he said. “Thanks.”

Whether we are parents or we are in a supporting role, it is crucial that we communicate openly and honestly. Otherwise tensions mount, misunderstanding occur and unnecessary conflict may arise.

By sharing perspectives, we can strengthen our connection and find a balance that works for everyone, especially for the person you are teaching, caring for or supporting.

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Aging Out of EPSDT – Part V: The Price of Adulthood

In parts I through IV, we’ve discussed in detail all of the struggles a low-income child with special needs can face trying to get their health care costs covered when they age out of the quite comprehensive Medicaid program called the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program. But what we haven’t discussed is what those costs can actually look like should they fail, like so many do, to find the coverage they need. In short, the out-of-pocket expenses for many relatively common disabilities can absolutely cripple a young adult’s ability to make ends meet.

Costs Increase Even With Coverage

To begin with, people with disabilities pay more to get through the average day than a fully-abled person even with health care coverage. One study showed that roughly half of all families supporting an insured adult with intellectual or developmental disabilities pays more than $5000 annually for costs not covered by their health insurance. There are a vast number of minor expenses that insurance doesn’t cover, from the obvious (co-pays and deductibles) to the subtle (transportation to and from therapy, a hired homemaker to assist with daily activities like making food.)

An Issue of Use

The simple fact is that people with special needs simply use health care services more than those without. How much more? According to a summation of several studies that took place over the last decade, low-income insured families with no children and no adults with disabilities spent approximately 2.2% of their family income on medical expenses. Low-income insured families with no children and with an adult with one or more disabilities averaged 5.6% of their income spent on medical needs — more than 2.5x more than the first group.

(And if 5.6% of your income doesn’t seem like a huge deal to you, remember that these families typically live with near-zero wiggle room in their budgets — when your ‘surplus’ income after necessities and expenses numbers in the dozens of dollars per month, the difference between $1500/year and $3750/year is huge!)

No Coverage? You May Pay the Ultimate Price: Institutionalization

Perhaps the most dire risk faced by newly-minted adults with special needs is the risk of losing out on all of the home- and community-based services (HCBS) that the EPSDT program offers. For many of these folks, if they cannot find the means to pay for their no-longer-covered home care aides out of pocket, their only remaining option is institutionalization — giving up everything they know and going to live in a full-time home for the disabled. It’s an option so frightening that many such young adults choose to instead live on their own knowing that their health care needs are going unmet.

Yes, Medicaid does offer a waiver that allows states to provide HCBS coverage, but the HCBS system is currently undergoing drastic changes because, while States love it’s reduced costs, the Federal government has noticed even those reduced costs are still staggeringly high. We’ll talk about the details of that situation in the next post.

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