Children’s Special Health Care Services
Being a parent of a child with special needs isn’t easy. Your days are spent Googling the latest treatments and searching for the best and brightest doctors who may be able to perform miracles. It seems like you spend more time in your car, transporting your child from appointment to appointment, than you do sleeping. You worry a lot, pray for a cure, and hope for the best.
This is everyday reality for Amanda and Willis Shaffer of Vestaburg and their four beautiful children, all of whom have various types of special needs. Their daughter, Dakota, is 14-years-old and has scoliosis, cerebral palsy and autism. Their son, Colten, is 10-years-old and has asthma, sleep apnea, Oppositional Defiant Disorder and Attention Deficit Disorder. Their daughter Harleigh is 7-years-old and has Russell Silver Syndrome (growth disorder), Asthma, chronic lung disease, central sleep apnea, delayed gastric emptying disorder and Chairi malformation (brain abnormality). And their youngest, daughter Zoey is almost 4-years-old and has asthma and obstructive sleep apnea.
Willis and Amanda Shaffer with their children, Dakota, Harleigh, Colten and Zoey
Having just one child with special needs can be overwhelming for any family. Having four kids with special needs can put even the closest family in emotional and financial ruin. Luckily for the Shaffers, they have been blessed with an outpouring of support from family and friends.
Support also comes from a program that many may not know exists: Children’s Special Health Care Services (CSHCS). The program covers over 2,600 special health care diagnoses and is for children from birth to age 21, and some adults with cystic fibrosis or certain blood clotting disorders.
“We simply would not be able to treat our kids without the CSHCS,” said Amanda.
The program assists the family with things they wouldn’t be able to afford otherwise, like medication and equipment costs. For example, daughter Harleigh is on 10 different medications, which would cost the family about $2,000 a month without insurance and CSHCS. The program also helps ease the family’s financial burden by helping to cover co-pays, hospital stays and travel costs when visiting out-of-town doctors.
In addition, CSHCS helps with:
· Paying specialty medical bills
· Deductibles
· Finding specialty services and providers
· Coordinating services from multiple providers
· Locating support groups
· Identifying community-based services to help care for your child at home and maintain normal routines
The Shaffer’s have been involved with the program for almost 14 years, shortly after learning of Dakota’s challenges. Amanda says the program has given them something invaluable- peace of mind. “It allows us to concentrate more on our children and less on medical bills and related expenses,” she said.
Amanda hopes more families are made aware of the program and encourages them to apply, regardless of how much money they make, or even if they are insured. That’s because your child’s medical condition, not your income, determines if you qualify for the program. Families with higher incomes, like the Shaffer’s, may be asked to pay a small yearly fee, but it’s well worth it in the long run. Without the program, it would cost the Shaffer family $8,000 a month for equipment, medications and feeding supplies-and that’s just for one child.
Helping other families in the same type of situation is a passion of Amanda’s. So when CSHCS was looking for a parent liaison in this area, she jumped at the chance. “In my new role I have the great pleasure of working with families just like my own, and it’s very rewarding to see their children smile and help parents hold their heads up high.”
The Shaffer’s obviously still have worries and stress, but say that without the Children’s Special Health Care program, it would be too much to bare, both financially and emotionally.
“If I said life was stress free, I’d be lying,” said Amanda. “But the stress sometimes is what makes me even more determined to make life better for my kids.”
With everything the Shaffer’s have to deal with on a daily basis, you’d think they’d be bitter and filled with grief and self-pity, which would be understandable. But just the opposite is true. As difficult as their struggles are, they know there are many other families whose situation is just as bad, if not worse than their own. Amanda said she does wonder from time to time why this happened to their children, to their family. And she admits it’s been a long, hard road with many hurdles and frustrations along the way. But to the Shaffer’s, it is what it is.
“That’s life, Amanda says with a smile and an upbeat attitude. “This is our normal; it’s what we’re used to, and it’s OK!”
So how do they do it? They take life one day at a time, and have learned to celebrate their children’s successes, no matter how small.
“My children are my pride and joy and I’m very proud of each and every milestone and each obstacle they overcome,” she said. “Their excitement and smiles when they accomplish something for the first time is the best reward ever.”
If you think your child may qualify for this program, contact a CSHCS representative at:
Clinton County: 989/227-3121
Gratiot County: 989/875-1004
Montcalm County: 989/831-3643