Childcare for child with multiple disabilities

[R2logan]

I am curious if anyone has a child with multiple medical needs (seizures, non-verbal, in wheelchair) and how you are providing childcare. We moved out of the area a few years ago and are receiving nursing services in our currently state but would love to relocate back to the DC metro area. All of the programs I have looked into have not been comparable but I saw that someone posted about DC having no waiting list for Medicaid for disabled children. I am curious if this provides nursing services. Alternatively, is anyone using a nanny or au pair that has been trained or that you have trained yourself in your child's needs? If so, where did you find this nanny (i.e. agency, etc). Any info is appreciated. Thanks!

[Anonymous]

We have used various nannies we have gotten through word of mouth, through care.com's special needs listings, through yahoo's mcneeds listserv https://groups.yahoo.com/neo/groups/MCneeds/info

and even through DCUM, either this forum or the nanny board. Our best nanny stayed six years and another stayed four.

No experience with medicaid because Maryland has a long, long waiting list. But the trade off is school services -- if you move into DC with a severely disabled child you may have a hard time finding good schools and an appropriate education.

There is also Easter Seals and St. Joseph's House in Silver Spring (Montgomery County) does after school care. Once you know where you are going to live (DC/MD/VA) and which county and neighborhood, that is the time to zero in on your care situation. Some schools have aftercare although I have not wanted to put my child with severe disabilities in aftercare.

[Anonymous]

BTW, welcome to DC!

[Anonymous]

Thanks for the info, we are not planning to relocate at this time but lived there previously and would love to return. We lived in Montgomery County before we left. Does your child have medical needs? Did you feel the nanny could handle this?

[Anonymous]

Anonymous wrote:We have used various nannies we have gotten through word of mouth, through care.com's special needs listings, through yahoo's mcneeds listserv https://groups.yahoo.com/neo/groups/MCneeds/info

and even through DCUM, either this forum or the nanny board. Our best nanny stayed six years and another stayed four.

No experience with medicaid because Maryland has a long, long waiting list. But the trade off is school services -- if you move into DC with a severely disabled child you may have a hard time finding good schools and an appropriate education.

There is also Easter Seals and St. Joseph's House in Silver Spring (Montgomery County) does after school care. Once you know where you are going to live (DC/MD/VA) and which county and neighborhood, that is the time to zero in on your care situation. Some schools have aftercare although I have not wanted to put my child with severe disabilities in aftercare.

Does your child attend an approved private school or Montgomery County Schools public schools? Do they have enough classroom supports for complex children (i.e. nurses, aides in the classroom?), is there inclusion opportunity while not compromising their other needs?

[Anonymous]

Edcd waiver in Virginia has no wait list and you can access skilled nursing if you qualify through EPSDT once Medicaid is in place.

[Anonymous]

Have you looked at Karasik in Forest Glen?

[Anonymous]

OP - If you are living in a state with good nursing care services for you child in-home and seemingly in a school division with good supports for those with complex medical needs, those are going to be hard to replicate in the DMV. Also, remember that your child will need services for a lifetime, and that a waiver is not transferable so as indicated DC would have to start all over again in the waiting line. There seem to be so many variables that you would have to consider and bottom line would be that you would always have to be able to step in and provide direct care until a replacement nanny, sitter or au pair was found AND have the time to train them. If you have the medical support your child needs and if your child is in a supportive and at least fairly inclusive setting, be very, very thankful.

[Anonymous]

Anonymous wrote:Edcd waiver in Virginia has no wait list and you can access skilled nursing if you qualify through EPSDT once Medicaid is in place.

Do you know if it is easy/hard to qualify for nursing?

Seems as though we have pretty decent services here and are already enrolled in the program so it makes a tough case to move. Agree with last post, we should be very thankful we have what we do have. I think we will always need to fill in the gaps. Maybe we can supplement nursing with a part-time nanny to gives us a break on the weekends and allow us to socialize a bit more rather than one of us attending and one of us staying home to care for our child.