Ill child makes coping extra hard

I know this might sound terrible, but I was just thinking the other day, that I am thankful my daughter got sick and her illness played out during a time when we were most financially able to handle it. If the same events were to happen now, I don't know how we would manage.

My heart goes out to people that have to deal with this kind of thing.

I work with a woman whose son has multiple disabilities, including profound MR. I don't know how she would cope without her wonderful husband, extended family, and friends who have supported them through all of this.

Not to take away from hard this kind of situation can be, the parents need to look into all the assistance is available. For example, home nursing care is often covered by insurance and always by Medicaid. Though due to the nursing shortage parents rarely get all the help they need, they usually get some help. Medicaid benefits are availbale for such children regardless of family income under a program usually called "Katie Beckett Waivers". The Children with Special Health Care Needs programs (Title V) provides help as well, including transportation. This is the SCHIP program that Mr. Bush refused to increase funding for. There are also Birth to Three programs nationwide that provide physical, occupational and speech therapy for special needs children. Children with MR and Autism can get wonderful assistance through state agencies as there is a long history of parent advocacy for these kids.
Nurses, especially pediatric nurses, should be aware of these options so that they can help direct families like this to the resources they need.

I have a disabled son, Katie beckett is not offered in every state. i have many friends who are 'on their own' for those cost in states that don't provide katie beckett. when WE first went to the state to see what we would qualify for the social worker made it sound like we had hit the jack pot in terms of support. she said because he was born with his disability we were not only entitled to a monthly stipend and medicaid but also 'backpay' from the time he was born. she told us to quit paying all our outstanding bills and that the state would cover them as soon as it went through which she was 'confident' we would have no trouble qualifying. i was very uneasy about this and so i finally called a few of the services directly such as social security. The lady from ssi started laughing when I told her how much money my dh made a year and she said 'your welcome to apply but you wont get a cent' which also ruled us out for medicaid, she was right we were denied through the social worker a few weeks later after we had thousands of dollars in bills needing to be paid. THANK GOODNESS our state does have Katie Beckett and without a waiting list and I found it thorugh someone on the internet (i was not referred by any social worker)

There are soo many great programs out there but even though we qualify for much more in terms of support the waiting list are quite long before we will ever receive anything..

My son is about the same age as this little boy. While my son had a number of health problems during his first two years, they weren't life-threatening problems. After my son was diagnosed with Failure-to-thrive, he was placed on a very expensive formula. Based on my income alone (we won't even add on the additional 40% his father earns), we could not qualify for any assistance whatsoever.

We are firmly placed in the middle class. His first year was especially difficult, between formula at 180/month, child care of 560/month plus medical bills and the financial commitments we already had. We had assistance from friends, family & enfamil (each providing us with a 1-month supply of formula). We had times when two or three of us needed to go to the doctor & we had to choose which one "got" to go (children first, parents second) that pay period. Blessedly, after my son's surgeries last fall & winter, he's been very healthy. Now we're just paying off the medical bills. We are very blessed.

Families like the Days are very much under the gun. Mr. Day apparently earns just enough to rule them out from many assistance programs but not quite enough to keep their heads above water. Their expenses, especially gasoline, have skyrocketed. I can only hope and pray that they can keep it together during these very difficult times.

You're right, and as I read the article I was thinking a little bit about that. I realize in the article that it says she needs to monitor his SPO2 and heartrate constantly, so she can't work. But at the same time, what does she do if there is a fluctuation? It's not like the kid is in the ICU where you are adjusting drug rates or O2 constantly. I mean really, it sounds like the mother is under too much strain work, rather than literally being unable to work.

Have you ever tried to find a babysitter for a special needs child??? YOu can adjust the o2 at home (and probably the drugs) and i doubt they would take a child with that much liablity at any daycare.


Im so far removed from this because thankfully we have been stable for a very long time but there was a time that i had to be at his side 24 /7 the few times i left him with people who were familiar with his condition he still came back with lumps and bruises because they just didn't get how fast a seizures can happen and would let him play out of reaching distance im sure with an stat problem they run into the same issue of people not being able to successfully overt a crisis from happening.


the other thing i forgot ot mention is that im not sure this boy would even qualify for katie beckett. ITs a huge developmental screen and my son partially qualifys because of his mental disability which this little boy does not have.

Whoa calm down there, killer.

lol, that wasn't said with any malice...