If you have a nonmobile child, where do you live?

[Anonymous]

I am the 9:19 poster. When you say that you don't pay any copays with Medicaid in DC, what happens if you go to out of network providers? Would my child be able to continue with her private ST, OT and PT? She is able to walk in a walker but she needs help getting in and out of it. She developed a neurodegenerative central nervous system autoimmune disorder at 3.5 years of age which resulted in a brain injury. Her speech is affected; she is very verbal just very hard to understand. She was already very talkative when she got sick. She is pretty much dependent on an aide for all mobility.

She easily qualified in MD for the waiver but we were told the list is very long (8 years) based on her category of medical fragility. We were told she would likely move up a category if she needed oxygen or a feeding tube, etc.

Everything is extremely expensive and she seems to be smart. I like that she is in an inclusive environment and in a regular kindergarten class and I'm hoping that we can just deal one year at a time. If we switch to public school, it sounds like Montgomery County is probably better.

Do you get at home aides or respite care in DC with Medicaid?

[Anonymous]

Can anyone recommend an architect that can advise on making a house ADA compliant? Or even better are there any free resources out there or groups that you could recommend that may have advice?

[Anonymous]

I'm not sure about out of network providers as that never came up for us. We have federal BCBS and practically everyone is in network, and it seems HSCSN has a fairly broad network as well. As I said, we ended up in a hospital out of state, and another time visited a specialist in PA, and all that was still covered. I don't know what Medicaid covers for therapies, though. At the time my daughter was getting all her therapies through EI so it didn't come up.

I did have a terrible time trying to apply for HSCSN. The process was a mystery. I finally got in touch with Family Voices and they were great.


And bumping because I also would be interested in hearing about architect recommendations.

[Anonymous]

Anonymous wrote:I am the 9:19 poster. When you say that you don't pay any copays with Medicaid in DC, what happens if you go to out of network providers? Would my child be able to continue with her private ST, OT and PT? She is able to walk in a walker but she needs help getting in and out of it. She developed a neurodegenerative central nervous system autoimmune disorder at 3.5 years of age which resulted in a brain injury. Her speech is affected; she is very verbal just very hard to understand. She was already very talkative when she got sick. She is pretty much dependent on an aide for all mobility.

She easily qualified in MD for the waiver but we were told the list is very long (8 years) based on her category of medical fragility. We were told she would likely move up a category if she needed oxygen or a feeding tube, etc.

Everything is extremely expensive and she seems to be smart. I like that she is in an inclusive environment and in a regular kindergarten class and I'm hoping that we can just deal one year at a time. If we switch to public school, it sounds like Montgomery County is probably better.

Do you get at home aides or respite care in DC with Medicaid?

HSCSN provides home aides AND respite care. If your child has any medical need such as taking a prescription on up to complicated medical equipment they will send a RN.

HSCSN had a broad network. I never had a specialist not be in network. Relatively fast to get in. See my blog for info on applying. The Katie Beckett waiver page is NOT specific to any diagnosis. The application process is the same for anyone. Downinthedistrict.eordpress.com

[Anonymous]

Op, wouldn't it make the most sense to live in a single level apartment or condo? Especially, is she your only kid? You could easily find a newish construction two bedroom condo with an elevator etc in dc for under 800k. Some of them have little parks and courtyards etc.

[Anonymous]

I have not read all of the other responses but if you would consider an smaller home in Bethesda you can likely find one with a wheelchair ramp already installed and possibly some other adaptions made. When we were looking at houses we saw a few that appeared to belong to the same family for many years and as the parents got older, they adapted the family home to accommodate the needs of a person in a wheel chair.

[Anonymous]

I would be very interested in a small home in Bethesda that could accommodate a wheelchair and be accessible. Were you working with a specific realtor?

[Anonymous]

You might be able to find something in SW eventually--one idea could be to buy two adjacent apartments and join them, but it's a hard thing to find on the market--there are realtors who know the area well. This is above your price range (and the co-op fee is obscene) but it's been on the market for ages so maybe they'd take a low offer. It already has an elevator: https://www.redfin.com/DC/Washington/1315-4th-St-SW-20024/home/59458786

This is a fixer-upper, but it's in good schools for any other kids, and close to Children's: https://www.redfin.com/DC/Washington/1511-Roxanna-Rd-NW-20012/home/10021496 don't know what the back yard situation is so not sure how you'd handle parking and getting your child in and out.

Also, there is more crime and poverty, and not a lot of diversity, but parts of Wards 7 and 8 have single-story houses, plus yards for a dog.

[Anonymous]

OP - Our oldest daughter has twin girls in a kindergarten public school program, and the simple fact is that public school is all about work nowadays and so for a young child with multiple health care needs once the child ages out of the public preschool program, if in a regular class setting of any kind the focus in going to be in an environment where academics is now the main thrust. I have seen St. Coletta's environment and for a young child who needs a lot of therapies and will benefit greatly from having the opportunity to have them as needed in a wonderful environment and for one whose cognitive abilities are most likely behind her chronological age, their developmental program would be quite appropriate. Clearly a means of communication is going to be key to learning on any level and to demonstrating one's cognitive skills. I just think you need to go and see if you can observe the class setting that your daughter would most likely be in and see if there is a pre-k and K idea. There is also no rush to get through kindergarten at age 5 so if you went to St. C. for a year and felt it was the inappropriate setting either for therapies, classroom peers or curriculum, you could easily apply to any of the other DC school ptions noted as a kindergarten student with the reasoning being that she needed a second year to continue to gain basic pre-literacy skills. You will also have the opportunity to meet other families with children with similar needs and perhaps get info useful to making a permanent housing choice.

Your housing choices will be a more difficult thing to manage, but having proximity to your daughter's health care providers will be important so I wonder if you have given any though to simply renting a one-floor condo in the DC area for a year to get your bearings on school placement, housing stock and best neighborhood. If you have more than one child, it is a more complicated decision of course as you need to consider the needs of all the children.

[Anonymous]

Anonymous wrote:I would be very interested in a small home in Bethesda that could accommodate a wheelchair and be accessible. Were you working with a specific realtor?

No, and it has been a while but what immediately pops into my head is the area from NIH up to Balducci's/Grosvenor Lane.. The house with wheelchair ramps and stuff would often need lots of other updates (kitchens/bathrooms etc).

[Anonymous]

Being able to get the Medicaid Waiver for her immediately, rather than being on the wait list for years, is the single biggest criteria for a child with your daughter's needs. The difference financially between what the waiver would cover for her needs, and what you'd pay for without it, is staggering. Especially since you say you may need to keep her home more often than not because of getting sick so easily. If there's no wait for the Waiver in DC, that's your answer. Then work the school side of it from there.

[Anonymous]

OP: in the longer term, schools in DC are not going to meet her needs in the next few years. I think renting in DC is a good idea and then looking around. But if you really want to land somewhere, then how about downtown or near downtown Silver Spring:
http://www.realtor.com/realestateandhomes-detail/9039-Sligo-Creek-Pkwy-Apt-201_Silver-Spring_MD_20901_M53084-94784?row=8

or something like this in Chevy Chase. Friendship Village even runs a bus around the neighborhood to shopping and metro in Friendship Heights. Good luck!

http://www.cbmove.com/property/details-map/1538754/MLS-MC8606493/4515-Willard-Avenue-Chevy-Chase-MD-20815.aspx

Bethesda:

http://www.trulia.com/property/3194525047-5101-River-Rd-713-Bethesda-MD-20816

[Anonymous]

Anonymous wrote:

Anonymous wrote:Just an FYI, there are some agencies that will loan and/or give you a ramp if you need it for your front steps. Check out Lollipop Kids Foundation. I was able to find a ramp for a family that I worked with. The foundation is in MOCO but not sure if you need to live in the county to use them.

MOCO has some good programs. There is an AAC classroom. There is also a physical disabilities program, PEP classes, etc.

You may find some ramblers in the 20814 zip code
http://www.realtor.com/realestateandhomes-detail/5411-Linden-Ct_Bethesda_MD_20814_M62648-41221?row=3

Or in 20902 (Silver Spring) or maybe Kensington. Those areas would be decent for a commute into DC (though not ideal).

A ramp can only have a certain slope to be viable for a wheelchair. A portable ramp can only handle two-three steps.

Yes, Lollipop Kids has a variety of ramps - we got one that could accomodate a heavy electric chair with 6 front steps.

[Anonymous]

Being able to get the Medicaid Waiver for her immediately, rather than being on the wait list for years, is the single biggest criteria for a child with your daughter's needs. The difference financially between what the waiver would cover for her needs, and what you'd pay for without it, is staggering. Especially since you say you may need to keep her home more often than not because of getting sick so easily. If there's no wait for the Waiver in DC, that's your answer. Then work the school side of it from there.

I totally agree with this. For this reason, you do NOT want to live anywhere in VA--VA has a very long waiting list, and ranks next to last on the list of all states when it comes to Medicaid services. It's a shame, because VA has lots more to offer--great schools, hospitals, therapies, etc.--but I would not recommend it for your family. I personally would look into MD's waiting list situation, since MoCo has better schools and other services for special-needs families than DC.

[Anonymous]

There are a lot of rambler houses in Silver Spring. I live in a 60 year old rambler which has just 3 steps to the front door. I have a portable ramp which I used for my mother to visit in a wheelchair. Other neighbors have permanent ramps on their houses. The big problem with a house like mine (and there are lots of similar ramblers), is that the bathroom is very small and will not accommodate a wheelchair. If you got one of these houses, you would have to rebuild the bathroom to make it accessible. We also have a basement, but there is no way to get a wheelchair down there.