Fostering a child with complex medical needs

[Anonymous]

We have been foster parents for three years and have a biological child in early elementary school. We are currently in between placements and a few days ago our agency informed us of a sibling set of two children close in age to our child, although they are all in separate grades. One of the children in the sibling set was recently diagnosed with a severe medical condition. The child will need to be hospitalized for several weeks due to an invasive procedure and then, after discharge, will have daily therapies (OT, PT, etc), appointments, and other minor procedures for an undetermined amount of time. The prognosis is good, but we have been informed that the treatment will most likely cause chronic health conditions. Most of our former placements have been short-term placements but this situation is very unique as the parental rights have already been terminated and we could adopt the siblings.

My husband has a fairly healthy work/life balance and I work for myself and have a flexible schedule for appointments. I also worked in healthcare before I began working for myself, so I think we are in a better position than most to be able to care for a medically complex child. Our biggest concern is whether or not we have the bandwidth. This is not our first time with a sibling set, but obviously this is a different situation. We are worried that we would turn our child and the other sibling into “glass children.” We really want to say yes as we know this is a difficult placement, but we want to know if there is anything we should take into consideration before we make a final decision.

[Anonymous]

I’m the bio mom to one kid with profound intellectual disability and then my other kid had brain cancer so I feel like I have some relatable experience. You sound ideally placed for this given the self employment and flexible job. In my case, I had plenty of flexibility and my husband was self employed and had flexibility as well.

I think there are three other big factors here. One is money. To not have glass children, you kind of have to have the means to outsource some care for the needy child so that the other kids still get to do all the typical things and don’t feel the childcare burden themselves. We have been outsourcing a whole lot of care for 16 years. It has been ungodly amounts of money. You also need to figure out what respite you can get from Medicaid and how long the waitlists are in your state. My daughter will turn 18 before she gets Medicaid.

Second is the strength of your marriage. Were you both very active partners in caring for your child under the age of 1? If not, then a medically needy child may kill your marriage. Of course, the more diaper changes we have been able to outsource over the years, the less we can be pissed off about who has done the most this week.

Third is the strength and flexibility of the kid you have. My youngest daughter seems relatively unphased by her sister with profound ID. But adopting this child in may be much more difficult for your biological child as they see the intense time you now spend on this other child.

[Anonymous]

Will they provide home health care? Will the therapists be able to come to your house? What about school? You will spend a lot of time working with the school to get him access to education. Will the foster system be able to offer any other assistance?

Our child for many years had profound heath issues (he is mostly healthy now and you'd barely know.)

Home health care helped us as he could not have regular child care during this time. He was our only, but it was still very time consuming even with professional nursing help.

I am thankful you are considering this as I am sure it is a tough situation for the kids. I'd ask a lot of questions about what kind of support you will get.

[Anonymous]

You need to have a serious discussion of what this looks like? Getting child care will be very hard and when they say appointments they are talking daily, for a few hours a day and realistically you need a sahp for that.

I had a SN child who had daily therapies when younger. We got lucky and they mostly outgrew things and tutoring can now be done online but the driving alone to appointments was a full-time job.

[Anonymous]

Anonymous wrote:Will they provide home health care? Will the therapists be able to come to your house? What about school? You will spend a lot of time working with the school to get him access to education. Will the foster system be able to offer any other assistance?

Our child for many years had profound heath issues (he is mostly healthy now and you'd barely know.)

Home health care helped us as he could not have regular child care during this time. He was our only, but it was still very time consuming even with professional nursing help.

I am thankful you are considering this as I am sure it is a tough situation for the kids. I'd ask a lot of questions about what kind of support you will get.

They'd only get nursing help if medicaid paid.

[Anonymous]

I have no advice or experience, but stumbled upon this and want to say you're amazing for considering doing this for those kids.

[Anonymous]

You are an amazing human being OP. I have a medically complex child and I wouldn’t wish it on my worst enemy. My child melts my heart so much and I love them so much, but it is soul crushing to see their limitations and it is emotionally draining to deal with all these medical stuff.

[Anonymous]

If this is DC, I imagine the child will have Medicaid through health services for children with special needs. If you can talk with a case manager there about what services you can get coverage for (in home therapy, pca, etc.) and also talk with the child's school about home/hospital education, extended school year, etc. you may have a better sense of what will be expected from you and if you can take it on.

[Anonymous]

Today we had the opportunity to talk further with our social worker in person. We learned that the medical team wants the major procedure to be scheduled when school gets out in a little over a month, meaning that we will have time to bond with the siblings and get to know them beforehand. Right now, the medically complex child looks and acts just like a healthy child and has no symptoms or mobility issues other than minor pains and mild learning disabilities, and he will deal with a loss of independence/new mobility issues while recovering and for several months or potentially years afterward. There is the possibility he will be in the PICU for a few days/weeks depending on side effects from the procedure, which would obviously put a lot of stress on or family unit, but they are hopeful that he will be able to stabilize and not have to be in the PICU at all. The medical team is anticipating he will be able to return to school on a regular schedule in the fall, although he will need an absence accommodation added to his 504 so that he/we are not penalized for the number of absences he will obtain from all of his follow-up appointments/procedures. The occupational therapist would come to our home/his school after he is discharged but we would need to transport him to physical therapy almost every day. We were informed that we could get an in-home nurse come if we so choose so. We were told that it is very likely that he will completely heal and not have any permanent mobility issues, but that there is always the chance that he is not able to make a full recovery/be 100% back to his normal self. A lot of it depends on the gravity of the side effects; on top of the side effects from the procedures themselves, he will also be on very strong medication with lots of side effects.

Our social worker also discussed details about their previous placement and personal things about the kids. I am starting to fall more and more in love with these kids, and I really want them to have a safe and stable home that I know we can provide. We have until the end of the week to make a final decision, and we are both leaning towards yes.

[Anonymous]

I'm the parent of a medically complex child and I would decline. Medicaid is a big part of the issue. You'll have to go an even further mile than I do to find physicians willing to take it. I feel for the kid, but I would never, ever bring that on my family.

[Anonymous]

Anonymous wrote: Today we had the opportunity to talk further with our social worker in person. We learned that the medical team wants the major procedure to be scheduled when school gets out in a little over a month, meaning that we will have time to bond with the siblings and get to know them beforehand. Right now, the medically complex child looks and acts just like a healthy child and has no symptoms or mobility issues other than minor pains and mild learning disabilities, and he will deal with a loss of independence/new mobility issues while recovering and for several months or potentially years afterward. There is the possibility he will be in the PICU for a few days/weeks depending on side effects from the procedure, which would obviously put a lot of stress on or family unit, but they are hopeful that he will be able to stabilize and not have to be in the PICU at all. The medical team is anticipating he will be able to return to school on a regular schedule in the fall, although he will need an absence accommodation added to his 504 so that he/we are not penalized for the number of absences he will obtain from all of his follow-up appointments/procedures. The occupational therapist would come to our home/his school after he is discharged but we would need to transport him to physical therapy almost every day. We were informed that we could get an in-home nurse come if we so choose so. We were told that it is very likely that he will completely heal and not have any permanent mobility issues, but that there is always the chance that he is not able to make a full recovery/be 100% back to his normal self. A lot of it depends on the gravity of the side effects; on top of the side effects from the procedures themselves, he will also be on very strong medication with lots of side effects.

Our social worker also discussed details about their previous placement and personal things about the kids. I am starting to fall more and more in love with these kids, and I really want them to have a safe and stable home that I know we can provide. We have until the end of the week to make a final decision, and we are both leaning towards yes.

It would be helpful to know what condition and surgery this is.

I don't for a moment believe they have nursing services. I have Tricare and couldn't get a non-nursing care provider to our house for respite hours for about 1 year. The wages were too low.

[Anonymous]

Right now my biggest concern is that he will be immunocompromised, which would change some of our usual summer activities, although DD is very go-with-the-flow. We began to talk with her today about the possibility of them moving in and how that would change our family life and she seems excited to have other kids in the house again.

[Anonymous]

Anonymous wrote: Right now my biggest concern is that he will be immunocompromised, which would change some of our usual summer activities, although DD is very go-with-the-flow. We began to talk with her today about the possibility of them moving in and how that would change our family life and she seems excited to have other kids in the house again.

Is this a cancer treatment?

[Anonymous]

Anonymous wrote:

Anonymous wrote: Right now my biggest concern is that he will be immunocompromised, which would change some of our usual summer activities, although DD is very go-with-the-flow. We began to talk with her today about the possibility of them moving in and how that would change our family life and she seems excited to have other kids in the house again.

Is this a cancer treatment?

It is a rare form of pre-cancerous benign brain tumor.

[Anonymous]

Anonymous wrote:

Anonymous wrote: Today we had the opportunity to talk further with our social worker in person. We learned that the medical team wants the major procedure to be scheduled when school gets out in a little over a month, meaning that we will have time to bond with the siblings and get to know them beforehand. Right now, the medically complex child looks and acts just like a healthy child and has no symptoms or mobility issues other than minor pains and mild learning disabilities, and he will deal with a loss of independence/new mobility issues while recovering and for several months or potentially years afterward. There is the possibility he will be in the PICU for a few days/weeks depending on side effects from the procedure, which would obviously put a lot of stress on or family unit, but they are hopeful that he will be able to stabilize and not have to be in the PICU at all. The medical team is anticipating he will be able to return to school on a regular schedule in the fall, although he will need an absence accommodation added to his 504 so that he/we are not penalized for the number of absences he will obtain from all of his follow-up appointments/procedures. The occupational therapist would come to our home/his school after he is discharged but we would need to transport him to physical therapy almost every day. We were informed that we could get an in-home nurse come if we so choose so. We were told that it is very likely that he will completely heal and not have any permanent mobility issues, but that there is always the chance that he is not able to make a full recovery/be 100% back to his normal self. A lot of it depends on the gravity of the side effects; on top of the side effects from the procedures themselves, he will also be on very strong medication with lots of side effects.

Our social worker also discussed details about their previous placement and personal things about the kids. I am starting to fall more and more in love with these kids, and I really want them to have a safe and stable home that I know we can provide. We have until the end of the week to make a final decision, and we are both leaning towards yes.

It would be helpful to know what condition and surgery this is.

I don't for a moment believe they have nursing services. I have Tricare and couldn't get a non-nursing care provider to our house for respite hours for about 1 year. The wages were too low.

The SW made it seem like attempting to get a in-home nurse would be an uphill battle but that the option was there for us. I’m not entirely sure that an in-home nurse would be worth it for us as his primary issues are mobility issues (he won’t have a feeding tube/trach/super complicated medical equipment). He would be at an increased risk of nighttime seizures due to the medication which is why the nurse was an option.