2447 Dream Mom has a dream
Dream Mom has a severly disabled son. When I first read her blog and saw a photo of him sitting up in a wagon, I thought it was current. But it was a reflection on a past event, when he had learned to pull himself upright in his wagon while they were out for a walk--a huge accomplishment for which she lavished praise. Now he is bedridden and frequently hospitalized. She has lost her home, her job, her savings, her retirement--and cares for Dear Son, as she calls him in her blog. However, she writes an even more touching story here, "There's no place like home," about a little boy, much healthier than hers, whose mother gave him up. But life could be easier for all parents of disabled children, she writes, if just these things were available:- "We need to have daycare facilities that take all children, regardless of their disabilities. While legally, they can not discriminate, they often won’t take them. They don’t make money on kids like that, even if they had employees trained to care for them. Daycare for disabled children, is practically non-existant. We need to do this so these parents can work and take good care of their children and themselves.
- We need more Respite care so when their parents are tired, they get a break.
- We need to require hospitals or medical centers that have specialty physicians who care for these children,
- and have suitable rest rooms so we can change them on a bed instead of on the bathroom floors.
- We need to have assistants located in the parking lots of our medical centers, so they can help us lift the children in/out of the car, making it easier, instead of paying people to say hello to us when we come for an outpatient visit.
- We need to allow parents to save tax free in a 401(k) for their disabled children’s retirement, in addition to their own retirement, so the children/adults will be less dependent on Medicaid, Medicare and other government programs.
- We also need to provide for medical withdrawals, based on need, for these 401(k) plans, in case of catastrophic medical bills. We could do this very easily, by using our current Social Security definitions of a disability, as a requirement for the new 401(k)."
I've come across many blogs written by parents of disabled children, who describe the challenges, heartaches, and victories of their staggering tasks. If blogging has done nothing else, it has certainly brought these exhausted and caring parents out of the closet so the rest of us can see what they deal with daily.
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2 comments:
Norma, this is close to home to me since I teach preschool special education. I feel like I can address some of these issues that you bring to the attention to your readers that are very important. You state:
We need to have daycare facilities that take all children, regardless of their disabilities. While legally, they can not discriminate, they often won’t take them. They don’t make money on kids like that, even if they had employees trained to care for them. Daycare for disabled children, is practically non-existant. We need to do this so these parents can work and take good care of their children and themselves
You bring up a good point and good child care is hard to find for typically developing children, and then throw in children that have developmental delays or some disability that impacts their ability to be "normal" throws a monkey wrench into the pot. The federal government provides support to parents for Infants age 0-2 who are at risk for developing delays or have delays. Each state determines which department it is headed by. By their third birthday, if they have demonstrated significant developmental delays, the school system MUST offer services to these children according to their needs. If a child is in a daycare setting, this could be consultative support. However, public education many times have centered based programs for these students.
We need more Respite care so when their parents are tired, they get a break.
Easter Seal generally has resources for respite care. Also Family and children services offer resources for parents to investigate. It's not perfect, but it's a start.
We need to require hospitals or medical centers that have specialty physicians who care for these children
Shriner's Hospital offers EXCELLENT services to children and provide free transportation and lodging for the family. Also I believe each state has Children's Medical Services where physicians from larger hospital travel to clinics in smaller communities to provide the medical support these folks need.
and have suitable rest rooms so we can change them on a bed instead of on the bathroom floors.
I bet the ADA would like to get in on this one!
We need to have assistants located in the parking lots of our medical centers, so they can help us lift the children in/out of the car, making it easier, instead of paying people to say hello to us when we come for an outpatient visit.
ABSOLUTELY!
We need to allow parents to save tax free in a 401(k) for their disabled children’s retirement, in addition to their own retirement, so the children/adults will be less dependent on Medicaid, Medicare and other government programs.
I do not know of a single parent I have in my preschool special education program that has a job that offers them a 401k since most of them are blue collar and many are disabled themselves. Most of these children are already on Medicaid and their expenses are huge. This is one place I am proud my taxpayer's money is going to support the less fortunate.
We also need to provide for medical withdrawals, based on need, for these 401(k) plans, in case of catastrophic medical bills. We could do this very easily, by using our current Social Security definitions of a disability, as a requirement for the new 401(k)."
Again, most of these children receive Medicaid already and parents are struggling financially - the 401K is either not available or the furthest thing from their mind - they are in survival mode. Many of these children receive Medicaid under what is called a deeming waiver (once called Katie
Beckett) and that was implemented by the Reagen administration.
Parents need support... lots of it.. no one plans to have a child with a disability and the strains on a marriage are evident at a very early part of the child's life. The ones that I see that do survive usually have two networks of support - extended family or a church family.
Probably one of your longer comments :)
Cathy
Thank you.
Let me clarify a few things: 1) I sold my house after I got a divorce, not because I couldn't afford it but because I couldn't find a good babysitter or daycare. I sold it to be closer to my work (I worked full time then.) Within the next 6 months, I lost my job due to a Corporate downsizing, Dear Son became really sick and then I went through all of my savings, retirement.... etc to live.
One correction, I think you broke up one of my bullet points-It should say something to the effect that the facilities that have specialty physicians should have attendants in their parking lots to help us. There are LOTS of academic medical centers that have specialty physicians. Dear Son has been going to one since he's been 2 months old. I have heard good things about Shriners too; although we have never used them. Dear Son has a high deductible medical plan through his father, that he uses and is not on Medicaid. Many disabled children are on Medicaid though, especially those with special needs.
Thanks again for posting this. This is just my experience with Dear Son, who is now 14. As for the 401k that Cathy menioned that most of her parents were blue collar, my point is that parents of disabled children, need to be able to find suitable daycare so they can work the same job that they normally would if daycare were available. For me, I had a professional job that offered a 401k.
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