It Takes A Village

Neonatal Doc had a post on February 24th titled, “Futility”. He raises the question as to whether futility in some instances, can really be defined as a quality of life issue.

One of the responses came from “that girl”. She states that,"parents of severely disabled children may tell you that caring for them is exhausting, gut wrenching, stress-inducing, expensive and time intensive but that she found it “amusing” that these parents were the first to step up and protest against suggestions that they not prolong life (through ventilation, etc.) because their children have defied the odds". She raises the point that perhaps some parents of special needs children should have the option of not continuing, if they have reached the ends of their rope. Some people, she says, would answer that this is the worst reason to deny care. You can read the rest of it on neonatal docs site.

I think that prior to having a discussion on the quality of life issues for these severely disabled children and/or the parents choices regarding continuing and/or denying them care, that we need to do a better job as a society to make it easier to care for these children and their caregivers so that they DON’T reach the point where they want to deny care or give up their children so they live the remainder of their life as a ward of the state. Nobody wins in that scenario. I also don't think, that because it's hard, they should get the option of opting out. My post today, will only address things that we can do to help special needs children and their families so they don’t get to that point.

We tend to think of “good care” in terms of taking care of these children medically. But we need to step back sometimes and look at the larger picture. I have identified several ways below, that we could address immediately, that would vastly improve the lives of these children and ease the burden on caregivers.

Daycare-Our schools are overflowing with disabled children yet we have no daycare for them. We expect these parents to work but have no resources for them. There are a handful of instances where we are now recognizing that-like the Easter Seals and some organizations offering some care but it typically ends at age 5 or 7. In my son’s current school system, I asked what percentage of the parents of special needs children would take advantage of daycare, if it were offered tomorrow, and the answer was 60%. Currently, for these parents, there is NONE. I remember working full time a few years back and attempting to find daycare. My employer had resources to help employees find daycare for each child. They were unable to locate any provider who would accept disabled children despite initially saying they would over the phone. We need to require daycare providers to provide care for all children. While the law states that they can not discriminate based on ADA, most don’t because it increases their ratios and cost them more money. We need to have care for them and care that is good and safe, like we do for our “normal” children.

That leaves most parents with option B. Finding their own care. If you find your own care, you will be paying out of your pocket, for all of it. If you find your own care, then you can not take advantage of your employer’s 125 plan for daycare since the funds must be paid to licensed daycare providers. In most cases, you do not have any licensed daycare providers that will take them even though by law they can not deny them. Therefore, it’s more expensive for you than for other parents.

School lunches-The state says that all schools that receive funds for school lunches must provide them to every student. If they do not do this, they can lose their funding. Yet, if you have a child that needs food pureed or chopped, they can’t do it and they won’t do it. Most school menus do not have lunch items that disabled children can eat, so it’s usually not an option. I have had to make a school lunch every day since my son was three. If most parents had to do this and work, they would be lined up around the building demanding change.

We do nothing in terms of offering 401(k) retirement plans for disabled children. If the parents of disabled children were able to save tax free for their children’s retirement and their own and were allowed hardship withdrawals, we could lessen the government's long term financial care for these children. We have some children that have full life expectancies yet they will never work; we need to do something for them. We could easily define disabled children by using the government "medical" definition as it relates to Social Security Disability.

We offer many programs for children going to college, but virtually nothing to help these children, who will never go to college, get much needed education, therapy and equipment outside of school, to raise their quality of life and ease the burden to caregivers and society.

We have inadequate 125 plans. These plans allow people to set aside a portion of your wages pre-tax to use for medical expenses. There are some instances, in the case of divorced parents, where only one parent can take this. We need to review these plans and in cases where only one of the parents has a employer based medical plan that is primary for the child, and/or the other parent is not working or does not have an employer based plan, that plan should allow for the employee to use the 125 plan. A 125 plan can be used as a cash flow manager to make it easier.
I have heard a statistic that 90% of all parents of special needs children get divorced. Where's the benefit?

Respite care-We don't have enough of it.

Prescription Drugs-Costs are skyrocketing and with the new high deductible plans, it is difficult to pay for the necessary prescriptions. In these plans, there is no co-payment and you pay for the drugs out of pocket. My son has nine prescriptions with a retail cost of $1800/month or a mail order cost of $3,936/month. Yikes! Some of the plans leave you no choice but to subscribe to Medicaid to be able to afford the prescriptions. Then of course, if you bail, the statistics will show that the high deductible plan was a success and more employers will adopt them sending more medical expenses through the federal government.

Finally, what do hospitals or major academic medical centers do to make it easier for these patients and their caregivers? I have been to 20 hospitals in my area over the last fourteen years and only "1" had a changing table that I could change a 10 year old disabled child when I take him to the bathroom for an outpatient visit. Many of these hospitals are major academic medical centers that are loaded with pediatric specialists but where is the support? Why not have a hospital bed that can be raised or lowered in the bathroom with disposable paper that can be placed on the bed for changing? A simple curtain that pulls around the patient would allow for privacy. Currently, I have to bring changing pads and lie them on the floor to change my son in full view in a woman’s washroom. At 130 pounds, it means I have to be able to dead lift him off the floor and into the wheelchair when I am done. No wonder parents are tired and exhausted. Would your nurses ever be able to do this alone to care for "one" of your patients? Where are your priorities? Look over your mission statement or your care statement that you hand out to every patient when they come through the ER. All of them say that you treat your patients with dignity. Does treating your patients with dignity mean allowing them to be changed on the bathroom floor in full view of other patients? Think about it.


Feeding tubes-I can’t begin to tell you how many nurses that provide pediatric care at facilities that are Level One trauma centers that do not know how to use a feeding tube to administer medicines (both liquid and pills) and/or for feeding. I had one nurse who tried to put the medicine in the wrong end of the feeding tube and broke the balloon on the feeding tube at midnight. They did not have any feeding tubes in the hospital and/or the emergency room. The only place they kept the feeding tube was in the clinic that opened at 8 a.m. Without the medicine, my son might have seizures. I had to drive home to get my spare feeding tube and drive back, a round trip of three and one half hours. I have also had nurses crush a pill and draw the dry contents up in a syringe and try to administer it via the feeding tube. This feeding tube issue has gone on for three years at this facility and they tell me every time that they are addressing it and teaching their nurses.

If your child is discharged from the hospital with prescriptions, you have to take the child home, stop at the drug store, take your kid in the wheelchair to get a prescription that could have been dispensed by the hospital pharmacy and added to your hospital bill or ran through your insurance card. Stopping at a pharmacy with a drive through is sometimes not an option because some prescription plans specify which pharmacies “must” be used for reimbursement or the reimbursement is “zero”.

Also, it would be nice one day to drive into an academic medical center and have someone near the handicapped parking to assist with getting patients in/out of the car. This is a far bigger issue than you might think. A friend of mine was crying after an office visit at the stress of taking her daughter to an Easter Seals visit on a rainy day and having to fight with the wheelchair in the rain, with a child in a full body brace and try to get the kid to the appointment. It is very hard work. Instead, we have facilities putting plasmas tvs in every room or salt water fish tanks in the lobbies to make the place look beautiful. Heck, we have greeters at Wal-Mart but we can’t get people to help us at for an outpatient visit. People think valet parking solves the problem, but it doesn't. It often costs more and poor families can't afford it.

When we level the playing field and do a better job addressing the needs of our special needs patients, then maybe we won’t have parents who want to deny care or parents who want to give up their children or have their children taken away. As Hillary Clinton, once said, "It takes a village".