Easing their burden: How we can do so much more for children with disabilities

Recently, the Boston Globe did a series on abuses of Social Security payments to children with mental health problems. Reading about the families in the series, and the challenges they face, made me think about a woman named Olga who was part of our family for a few months in 1996.

Olga was a home health aide, a big, soft woman with a soothing sing-song voice and a peaceful smile. She came every weekday morning to help care for our severely disabled baby, Aidan. Aidan was born with lissencephaly, a major brain malformation. While we hauled 5-year-old Michaela and 3-year-old Zack out of bed and got breakfast into them and clothes onto them, she held Aidan and fed him, slowly and carefully, stopping occasionally to suction his mouth if he spit up. While we put Michaela and Zack in the car and took them to preschool, and ran to the grocery store or to the drug store to pick up medications, Olga washed Aidan and dressed him. While we picked up toys and unloaded and loaded the dishwasher and washed and folded laundry, Olga held Aidan and talked to him, comforting him through seizures, easing him into sleep. She stayed until we picked Michaela and Zack up from their half-day program, and then she kissed Aidan goodbye and left us until the next day.

Those hours with Olga were crucial for us. Aidan’s needs were intense and unpredictable; after Olga left each day, we played life by ear. And the crazy part is that Aidan’s disability alone didn’t qualify him for home health aide services. We were able to have them through our hospice benefit, because Aidan was at risk of dying soon—which he did, within a few months. If Aidan’s seizures and choking spells had been a smidge less severe, daily life would have been nearly impossible.

The vast majority of my patients with disabilities have nobody like Olga.

Even with Olga, either my husband Mark or I had to be no more than a few minutes away in case he had a really bad seizure or choking spell. Aidan was not a baby who could go to daycare, not with his seizures, medications and home therapies. I worked part-time, and Mark, a respiratory therapist, worked nights and weekends around my schedule so that one of us was always home. We were lucky that our jobs gave us the flexibility to do this.

Most people don’t have that flexibility. Most of the families of my disabled patients are living off of one income—or government assistance.

“The medications and therapies and appointments are hard; the parents of my disabled patients sound more like nurses than parents sometimes.”

Having a disabled child is hard. I don’t just mean hard emotionally, although it’s absolutely hard emotionally. I mean day-to-day life is hard. It’s hard to make a living. It’s hard to go places, whether it’s because your child needs a special seat or wheelchair van, or because his disability or behavior makes being places like grocery stores difficult. If you need equipment, like a communication board or a walker, it can take weeks or months of paperwork and waiting. The medications and therapies and appointments are hard; the parents of my disabled patients sound more like nurses than parents sometimes. Raising your other children is hard, when so much attention needs to go to the disabled child. Nearly everything in life, from the big to the small, gets complicated.

Don’t get me wrong: we loved Aidan fiercely, and never for a moment did we wish we didn’t have him. He was a beautiful, worthy child; every child is beautiful and worthy. But we couldn’t help wishing he’d been born well and whole, without any disabilities. We were—and are—grateful for Aidan’s existence, and the lessons he taught us. But we didn’t ask for life to be so hard, for him or for us.

Nobody asks for life to be hard. I think of this often when I am caring for my disabled patients. Some are physically disabled, like Aidan. Some have mental health problems, which can be just as disabling, and make life just as complicated. Many of my patients are poor, adding a whole other layer of difficulty to their already difficult lives. As it was for us when Aidan was alive, caring for my disabled patients means climbing one obstacle after another.

I do what I can. I spend a long time with them each time they come, as patients pile up waiting to see me. I write letters and fill out forms for school, employers, transportation, medications, medical supplies, support services, landlords, and utility companies. I talk to specialists, teachers, mental health providers, school nurses—trying to build a net to hold them and support them. It helps, but it’s not enough. These children need so much more. They need caseworkers that can devote the hours it takes to find creative solutions to problems. They need ready access to health insurance that covers all of their medical expenses, not just most of them. They need education—given in a way and in a setting that works with their disability. Their families need support, both emotional and financial. None of this is available easily. It all costs money, which means that getting anything requires a fight. Families get worn down, especially when the message is often that they are asking too much. They aren’t.

Nobody asks for life to be hard, and every child is beautiful and worthy. It frustrates me that we as a society can’t seem to grasp these simple facts and rise to the occasion. It shouldn’t be so hard for these children, and these families, to get what they need to make it through each day. There will always be people who abuse the system, but focusing on that misses the point.

Mahatma Gandhi said that a nation’s greatness is measured by how it treats its weakest members. I can’t think of anyone weaker than a disabled child, especially one who is poor. It would cost us money to care for them well, but as a nation we’ve spent lots of money to be great in other ways.

This would be real greatness—and worth every penny.

15 thoughts on “Easing their burden: How we can do so much more for children with disabilities

  1. Dr McCarthy, Thank you so very much for your input! I always appreciate reading your views! Thank you so much for how you spend extra time with patients! Having a child with complex medical needs is beyond challenging as you have stated! A doctor who is willing to assist in any way brings the burden down, even just somewhat and this is so important! Even pointing a direction for services is a huge support system. There are times in my son’s care that we have not even had that. After 13 years in my son’s complex needs that my spouse and I were strongly questioned why we were seeking care for him from 2 programs (we replied because his Doctor from CHB referred him to both and they met different needs!). It is nothing new that programs do not understand the complex needs of children/adolescents with mental health problems diverse medical and mental health needs. Once adulthood nears programs become harder to gain access. Finding care in one hospital is usually not possible. We cannot find this locally at all and even in one state is not going to be reasonable for his specific needs.

    Having doctors who understand and assist the parents as well as the patient truly lessen the burden. Thank you Dr Claire, you always write with compassion gained through experience. I wish some of your colleagues understood as clearly. Wonderful doctors at CHB and elsewhere have cared for our son, but he fell through the cracks along the way. More assistance was needed to prevent some of the problems he has now. We as parents have had to be his social workers, nurses, educators, and care-providers when we expected just to parent this boy. We also had to be his advocators to obtain the best possible education and health care when his care was not always optimum. Sometimes this did not give me the best name. More than once I was told “we do not need “advocates” here. If you have a child with complicated care, you need to advocate for their care when they are not able to speak up.

    THank you for speaking about mental health and what it means to parent these kids.
    Ginny Miller

  2. I’m very thankful to live in a state that provides more than most do as far as home care goes. My daughter has severe CP and many medical problems. We have 87 hours of nursing care a week, which enables me to work (I have to, as a single mom) and do things like run errands, clean the house, get a good night’s sleep once in a while, spend one-on-one time with my other child, and have a little me time. I know families in other states that have no nursing care at all! I cannot imagine how that is supposed to work, as their children cannot attend regular daycare or go to a babysitters. Some of them have the grandparents help out so they can work, others are not able to work at all and depend on just one income. I don’t know any other single mothers that have no nursing and cannot work. I suspect they are out there and just don’t have the time to get on the internet to connect with others!

  3. What an excellent post! Hope it can be read by some policymakers.

  4. Thanks for this article, I can so relate to everything you wrote. I have two teenage boys with Duchenne Muscular Dystrophy. I am fortunate. I am able to stay at home but that means my husband works 80 hours per week and frequently travels. I often feel like a single parent without the financial burdens. I thank God for Angela and Jayne, two precious ladies who help me care for my boys and even allow me to spend some girl time with my daughter on occassion. And I thank God for excellent health insurance but it doesn’t cover home health aid. Fortunately the state of NH does provide that for us. I also thank God for the other ladies in our Joni and Friends group of moms of kids of all ages and disabilties of all kinds. It is so important to have the love and support of others who can relate to your life.

  5. I’m a single mom to 3 children, 2 of whom have significant special needs. I’m fortunate to have a good job and flexibility, but I find it incredibly difficult to meet my family’s needs. I can’t afford all that my sons need, (not extras, but real NEED!). Insurance won’t cover it all, respite money is almost non-existent. I’m fighting to keep my sons living at home – but there are no supports, no financial help for me to do that. My daughter’s life suffers – she doesn’t have play dates, she doesn’t have friends that she can see on a regular basis. Weekends and holidays, help is even more scarce, and it’s nearly impossible for me to take my children on an outing, even if it’s in the backyard. It is emotionally hard as well, and even the most well-intentioned of family and friends just don’t get it. I’m a college grad, have a good job, am intelligent and advocate for my children – I’m also beaten down, exhausted, emotionally fragile, feel alone and feel guilty ALL of the time. My children are beautiful, amazing and inspiring. Each of them deserve so much more, they each deserve to live a rich and rewarding life – whatever that may mean to each one of them. I’m falling short of giving them that, VERY short, and I hate that. And I cry for them. All 3 of my children are worthy – and all 3 are not getting what they NEED. And that’s a crime.

    1. You are an incredible mother–you are handling more than most people ever could. I wish I could get you some help looking for resources. Have you checked out the Federation for Children with Special Needs (www. fcsn.org)? Their website may have some useful links. Have you talked to your child’s doctor, or your doctor? You deserve some support. Please hang in there; it may feel like you aren’t doing enough, but I have a feeling you are doing way more than you realize.

  6. Wonderful column. I was so frustrated by that Globe series, and you put everything I was thinking into words. As a PICU nurse, I see a portion of what these children & families go through, and it is heartbreaking. Thank you for this column.

  7. Excellent article. Sometimes all we need are people like you to really hear us. Hear our daily struggles that never go away. Hear our frustration with the system that makes our children wait so long for apppointments, equipment, etc. And especially to hear our anger at professionals who don’t always see our children in the same light that they see other children. My daughter is now 14. When she was a newborn she had 84 hours a week of nursing care for eight years because of her overwhelming needs as a severe cardiac, respiratory patient. She has done well and is now down to 11 hours a week of PCA hours. Without the help of my nurses we never could have survived. I had 4 other children to care for. I had to quit work. Even with the help we never recovered financially as I have had to work from home since her birth. I thank God every day that I still have her with me. She brings us so much joy but the system still has a long way to go.

  8. Dear Dr.McCarthy, Thank you for this blog. It is the first thing I read when I begin work every morning as a psychiatry fellow at Childrens…it grounds me and reminds me of the possibilities for compassion and gentleness that each day holds. Wishing you and your family a wonderful holiday season.

  9. This is an awesome article. I am glad to see that a physician can relate to what parents with children with special needs deal with every day. I am a pediatric home care nurse who constantly see these families trying to survive on what they have. It is very sad how the state has decided to cut these poor families nursing hours while they are struggling to keep their homes and keep their children alive. These poor families do not have the money, the resources or the energy to fight. But, I hope they can find the strength.

  10. I am a recently graduated physician.I have a 19 mo old with multiple congenital anomalies. I have not gone back to my career since he was born. I usually dont write in blogs, but this article was so emotionally moving that I couldn’t help it.
    I have my parents with me to help me , but I cant imagine what I will do once they have to leave. this article just echoed my hearts feelings.I will be coming to boston in march for my son’s heart surgery, I hope I get to meet Dr.Mc Carthy.

  11. Thank you for this article! I have a child with multiple special needs…2 of them being rare. The docs didn’t want to diagnose his overlying syndrome for 4 years. I think that having the appropriate diagnosis helps him to get all of the services that he deserves and needs. As of right now, he’s well over $3.5 million in. (Over $1 million before he came home for the 1st time.) Thank you for your understanding and your insight into our lives. As of right now we only get 4 hours 2 times a month = 8 hours/month of respite care. He needs an AAC device, but we can’t pay to get one. Thank you again!
    Jen mom to son, Avery, 6, HLHS, CP, 2 strokes, seizures, G-tube, CdLS w/autistic behaviours

  12. I think a physician who understands the complexities facing families of special needs children is a physician with personal experience with a special needs child. Pediatric residents and fellows need better training rather than an advocacy month here and a developmental or behavioral month there. I am general pediatrician in Ohio. Some daycare centers have now begun to specialize in children with extensive medical needs. They bill public and or private insurance to get paid for caring for these children. Personally I think it is more cost effective and better for the child to get care in the home as you did but that would mean the parent not the center would have to handle the paperwork. Unfortunately, children with high behavioral needs, autism, but no medical issues cannot count on any funding stream as insurance denies coverage.

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