How To Be a Hero for Chronic Illness Patients

This is a sponsored post, but as always, all opinions are my own. Thank you for supporting Kate the (Almost) Great!

As of 2014, there are approximately 133 million Americans living with some kind of chronic disease, which is around 40% of the population (x). That’s a lot! According to the National Health Council, “About half of all adults have a chronic condition, and approximately 8 percent of children ages 5 to 17 were reported by their parents to have limited activities due to at least one chronic disease or disability” (x). And about a third of the population lives with multiple conditions! If you’ve read more than 3 posts on this blog, you probably know that I’m one of them. I’ve lived with health issues for 18 years, which means that I know how those of you without health issues can help those of us with them. In this post I’m breaking down how you can be a hero for us, as well as an amazing financial resource for families of kids with chronic health problems.

How To Be a Hero for Chronic Illness Patients

Contact your government officials – If you’re American, you know that there has been a lot of ups and downs in healthcare legislation in last 10 years. The Affordable Care Act was passed and some government officials or another have been trying to get rid of it ever since. I also hear that some English officials have been trying to get rid of or reduce the NHS in recent years. All this to say is that it can be very anxiety-inducing to not know if your government protections will continue or be reduced. Especially if you feel like you’re the only one doing something about it! So something you can do for my fellow patients is contact your representatives and let them know how you feel about various healthcare issues.

Why you should contact your representatives + how to do it

Know we need certain accommodations? Offer them up front – Something my friends and family do that I really appreciate is they always have my accessibility in mind when we make plans. Will Kate be able to sit at this event? Does this restaurant have Kate-friendly foods? It was so mentally exhausting to have to read a million menus when I was in Ireland, and I really appreciated that my friends and family helped me out. Do you have a friend who can’t do even one stair? Call the restaurant you’re going to and ask them about their accessible entrance and tables. (And know that if they have one stair, they’re not accessible.) Do you have a friend with IBD? If you’re meeting them for shopping, research available bathrooms on your shopping route. Anticipating our accommodations will make you a hero to us.

Stand up for us when you see someone doubting our accommodations – As a disabled person who takes public transportation near daily and doesn’t always use a cane, at least one person per month gets mad at me on the bus because I don’t look disabled. I can’t stand for my entire commute without extreme pain for days, but I’m young and “don’t look disabled,” so often I’ll be asked to give up my seat for someone else. Sometimes, I get yelled at. This can be really overwhelming and distressing. If you see something like that happening, even if you don’t know the person, intervene. In this particular examples, you could give up your seat so the person being harassed is left alone. If someone has IBD and requests more bathroom breaks, but the person in charge denies them, point out that it’s needed. If someone wants a straw at a restaurant and the waiter refuses, point out that straws can be accessibility devices. You get the idea. Doing these things can make you a hero.

How to become an advocate for patients | Examples of ableist language in everyday life

Offer concrete help when you know that things are especially bad – It’s one thing to say, “Let me know if you need anything!” While you might think it’s helpful, it’s way too general, and a lot of times people aren’t as likely to ask for help if it’s vague. Is your friend or family member having a flare? Offer to bring them meals to get through the flare. Does your friend have a kid with a chronic health issue? Don’t say, “Let me know when you want help!” It’s much better to say, “I know you have to take Johnny to the doctor on Thursday. Do you want me to babysit Annie?” Here’s another example: recently, a sorority sister of mine had heart surgery, and another sister organized a meal train for her family during that time. If I was in that situation, the one who organized a meal train and all of the people who participated would be heroes to me.

Do research on your own without relying on the patient for all of your information – Yes, the patient with the condition is more likely to know the day-to-day information about the condition. But it’s also super mentally exhausting to be the one always educating people around you, especially if it’s important people in your life. Google the condition! Often there are organizations that specialize in an illness or group of illnesses; what do the websites of those organizations have to say about the condition? There are also high-quality sites for hospitals like the Mayo and Cleveland Clinics. You can use those websites to learn more. And there are loads of patient advocates like me out there! Read their blogs, follow them on social media, etc. WEGO Health now has an amazing resource: a directory of thousands of patient leaders. (There are over 6700 people included!) You can search by condition generally, like arthritis, or specifically, like rheumatoid arthritis. It’s a great resource!

Obviously you shouldn’t be acting like you know more about the condition than the person living with it, but it is such a weight off to know that I don’t have to explain my illness to others because they’ve looked into it already.

A guide to chronic illness for those who don’t have one | What abled people need to know about disability

Help raise money for families struggling with medical costs – What a lot of people don’t know that is just how expensive chronic health issues can be. They think that, as long as you have insurance, you’re good to go. But unfortunately, that’s not true. Even if you have “good” insurance! There are so many things that insurance doesn’t cover or doesn’t completely cover, and those prices add up. And what if a working member of a family isn’t able to work anymore? Or what if a family regularly has to travel across states to get the best medical care possible? Insurance doesn’t pay for gas, hotel rooms, or meals. This is why a lot of Americans have to turn to crowdfunding sites. So something you could do is set up a fundraiser for a loved one who is struggling. I don’t think that you should start a fundraiser for a friend or family member without getting the okay from them. It is their life/lives; if they don’t want it on a crowdfunding site, respect their wishes. But if they give the okay, then managing that for them could be very helpful.

Is chronic illness a disability?

Introduce them to programs that can help out – Maybe you’re not in a position to help someone out directly, like by doing any of the above things. Hey, life is tough and we all have our stuff going on. But something you can do is introduce your friend or loved one to a program that can help them. And I have just the one for you. UHCCF, a nonprofit, provides grants for families with kids who have a chronic health issue to help with medical costs that insurance might not cover.

Let me explain exactly what they do …

About UHCCF’s Grants

What is UHCCF? The UnitedHealthcare Children’s Foundation is a 501(c)(3) non-profit organization that offers financial support to families so they can focus on what is most important – improving their child’s quality of life. UnitedHealthcare itself is a division of UnitedHealth Group, “a highly diversified health and well-being company headquartered in the United States, serving the markets for health benefits through UnitedHealthcare” (x).

What are these grants? UHCCF grants help with medical expenses not covered, or not fully covered, by their commercial health plan. This is so helpful because, as any patient or patient’s family can tell you, these plans generally don’t cover everything. And these extra medical costs can add up really fast. Some of the more common uses of grants include multiple sclerosis treatments or herapies; autism therapies; diabetes treatment or therapies; hearing aidsl; orthotics; or physical, occupational, and speech therapies.

Who can get these grants? These families may have a child who has a speech delay, lives with autism, battles a chronic illness or life-threatening disease, or may need hearing aids to better understand and play with siblings. Qualifying families can receive up to $5,000 annually per child ($10,000 lifetime maximum per child) to help pay for medical services and equipment. You do not need to have insurance through UnitedHealthcare to be eligible for a grant! In fact, that more than 75% of awarded grants have been given to families not covered by UnitedHealthcare. 89% of people who apply for a grant are approved, and there are 2,500-3,500 grants typically awarded each year. To be eligible for a grant, a child must be 16 years of age or younger. Families must meet economic guidelines (e.g. family income must not exceed $100,000 for a family of 4), reside in the United States, and have a commercial health insurance plan. Grants are available for medical expenses families have incurred 60 days prior to the date of application as well as for ongoing and future medical needs.

What experience does UHCCF have with these grants? So far, there have been 20,000 grants awarded adding up to more than 48 million dollars. And they want to award another 30,000 (THIRTY THOUSAND!) grants in the next decade. Why shouldn’t you or your family be one of them?

Here are some examples of kids and families that have received grants:

Laurie from Providence, UT

Laurie was born premature with a congenital heart defect, hearing loss in both ears, sight issues, and delayed motor skills. She spent her first months of life in the NICU and underwent numerous surgeries. She surprised all of her doctors with her firecracker personality and determination to survive. As she grew, she had trouble walking. Four UHCCF medical grants helped pay for with foot and ankle orthotics, eye appointments and specialized glasses, several ear surgeries, as well as specialized hearing aids to support Laurie’s severe hearing loss. Now her motor skills have greatly improved, as well has her walking ability; her speech has blossomed; and she can see and hear much better at school.

Aydren (AJ)

AJ is a smart, fun, outgoing, loving child. Developmental delays means he demonstrates difficulty with motor planning and following multi-step directions. He has poor attention to non-preferred tasks and requires support to complete them. He puts a lot of pressure on himself to be perfect at everything he does and yearns to be independent but is unable to do simple tasks on his own.The UHCCF grant has assisted AJ with additional OT time to help him master his ADL’s and fine tune his motor skills.

How do you apply for these grants? You apply here! Your child must be 16 or younger when you apply, they must have a Social Security Number, and your family can’t exceed maximum eligible family income as documented on IRS Tax Form 1040. (This is $50,000 or less for a family of 2, $75,000 or less for a family of 3, $100,000 or less for a family of 4, and $125,000 or less for a family of 5 or more.) Your child has to have primary insurance coverage by a commercial health plan, although secondary insurance through Medicaid or CHIP is allowed. Additionally, your child has to be under the care of a licensed medical professional, and the treatment/equipment/services you’re applying about have to be prescribed by a MD, DO, or Au.D. There are some exclusions, so make sure you read about them before applying.

Don’t need a grant but want to help? You can donate here, or you can participate in some of the fundraising events across the country. For example, there is 2019 UHCCF Golf Classic in Mississippi on October 21, and there is a UHCCF team running the Marine Corps Marathon in Washington, D.C., on October 27. You can read about these and other events here.

Thank you for being a hero!

How could people be a hero for you?

Like this post? Check out:

Chronic Illness Advice: Resources for the Newly-Diagnosed Patient, Chronically Ill Tips: What To Do When a Doctor Isn’t Listening, The Cost of Chronic Illness + How To Make It Easier, A Complete Guide to Advocating for Patients