Epilepsy Foundation

My 21 year old daughter is disabled with epilepsy. She wants to live on her own but needs some support. She is on a fixed income so our resources are very limited. I have looked every where I can think of to find a placement but everything is geared to the mentally disabled or to the elderly. Does anyone have any suggestions of where I can look?
Sincerely,
Mom

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This is a problem I have been working on for years and have not solved. My daughter is now 24. We had her in an apartment, but she had several episodes of clusters of seizures that ended up with neighbors finding her seizing. We then had someone come in to check on her once a day and make sure she had her meds. Still had problems. Today, we are takikng her to a boarding home with people that have a variety of diagnoses, mostly related to mental illness. Not because she is mentally ill, but because the alternative is, as you say, either developmentally disabled or elderly. I did find one home in our area for young adults who were being taught life skills, but they would not take her because they said they didn't have a nurse available. If you find anything, please share. It is hard to believe there are no facilities for young adults who just need a little hep and not full time care. Like assisted living for young people. But I have not found it.
Thanks so much for the info. Merry Christmas. Carmen Finlay

Lynne Stokes said:
This is a problem I have been working on for years and have not solved. My daughter is now 24. We had her in an apartment, but she had several episodes of clusters of seizures that ended up with neighbors finding her seizing. We then had someone come in to check on her once a day and make sure she had her meds. Still had problems. Today, we are takikng her to a boarding home with people that have a variety of diagnoses, mostly related to mental illness. Not because she is mentally ill, but because the alternative is, as you say, either developmentally disabled or elderly. I did find one home in our area for young adults who were being taught life skills, but they would not take her because they said they didn't have a nurse available. If you find anything, please share. It is hard to believe there are no facilities for young adults who just need a little hep and not full time care. Like assisted living for young people. But I have not found it.
I wish I could meet ya to talk to you in person. I've had seizures all my life and am retired from a university library. I average 3 to 4 seizures per mo. I have lived pretty independently but depend on my wife for most of my transportation. I can understand your daughter's wish to live more independently. I think I know pretty much how your daughter feels. All epileptics are different and have different needs, just like other people are.

Rich
I know what you are talking about. When I went to the first apt. building that charged their rent on a percentage of your income I almost dropped when I opened the door. It was sooo hot in that building that I knew before stepping into it that I couldn't live there. As you said, many elderly people lived there, so they kept it comfortable for them. The easiest thing for you to do is contact your county 'Social Services' and find out which apt buildings are in their program that you can get reduced rent at. In my county these biuldings charge 30% of your fixed income for rent that includes heat, electricity, water, and garbage, the renter has to pay phone,TV,and Internet. Check it out near you, the percentage rent may be what your daughter needs. Ther are also medical people available who work in the building, so they give you a feeling of safety with their presence.
I know from dealing with some state and county agencies that some of these places have waiting lists of anywhere between 2 and 5 years. What I am saying is, if you are thinking about one of these programs, you need to get on one of these lists as soon as possible and check back frequently so that your name stays active on the list.
Yes Kevin, that is something I should have mentioned. It is amazing how exiting the opening of one of these apartments is to the people at 'Social Services'. Many times an open apartment is as good as gold to these people and they will do anything that they can do to get someone into the empty apartment ASAP. Many times they will help with different things that are needed. They do this because they know that you don't just suddenly have everything that is needed to live independently. One of the towers near me has scheduled pickups each and every day to provide people from the tower with rides to the mall, hospital for DR's appointments, grocery stores. The rides are there, you just have to make use of them.

I can certainly understand and am going through the same thing.  I have had partial complex seizures for 54 years. spent most of my life living with my parents. Now they are both deceased, and the soc sec disability payments to me are less than $800. a month. Now, trying to find a place is very difficult. Several internet friends who live in NE, AR, TX, MD, GA, OH, MI have said to me, come over here for a while and I'll see if I can find you a place to live. I've been to all of those states and no one could help.  Now at the age of 54 its not only Epilepsy but the hospitals have had me in the ER for Angina (heart problems)  the Hematologist says I'm Anemic and lacking Iron, vit B12 and folic acid.  Then another Dr feels as though many symptoms I complain about are Diabetes type 2 which my mom had. High blood pressure and an Underactive Thyroid gland are also a problem.  Depression is another longstanding problem. If I can't find a place to live soon, with all these medications and the need to frequent Hospital and Dr visits I have no clue as to what to do.

I'm beginning to see why people join cults, gangs, commit suicide and things. Where you reach a point where there seems to be no way to solve the problem, who wants to continue living in the mental emotional pains that are 24 hrs a day.  My support system which was my parents are gone. Not one person other than the internet strangers that I write to as a means of support, but no one in my life or no agency or place to find answers to my problems.  I've written letters to the United Way, Red Cross, Salvation Army, Church pastors, and no response from any of them.  Im' running out of choices or ideas.  Housing which is the most important part of my problem is the issue I need to deal with first. Here in Atlanta they have housing for Elderly but my age 54 isn't elderly to them.  There are Apt buildings for Mentally impaired, but I'm not that.  An apt building for Mobility impaired but thats not me.  An apt building where every resident is HIV+ but thats not me.  Everyone but me has a place.  I have no idea of what to do. Should I break my leg and become mobility impaired? Should I go out and get Aids?  Should I damage my brain and become retarded? I'm just running out of ideas.

I truly wish the Epileptic Foundation was aware of what we go through and in addition to what they are doing at least focus on the issue of Housing. What can a person be, or do if he or she first of all has no residence or place to live?  I may be able to develop or learn certain things, but I cannot do one thing until I have a place to call home.

Hi,

   I am looking for housing too. I have epilepsy and know what it can be like. I am also a certified nurse aid. I also went through nursing school (halfway anyway, before I was dismissed while I was in the hospital when I was sick). It'd be cool if your daughter and I were roomates and I could help take care of her when she's seizing. Where do you all live, and how's your daughter doing now?


I know this feeling for sure. It feels hopeless. I really, really wish I could work- I hate this lifestyle. I wrote a letter to my congressman. No word back. Been thinking about running away- going to somewhere tropical. I mean, I am still having seizures, no matter how many drugs they put me on. I should just go live on the beach in Hawaii. If I'm gonna be homeless, it won't be that bad, right? Good luck man. I know I don't have an answer for ya, but just know I feel ya. 
Kevin Knight said:

I can certainly understand and am going through the same thing.  I have had partial complex seizures for 54 years. spent most of my life living with my parents. Now they are both deceased, and the soc sec disability payments to me are less than $800. a month. Now, trying to find a place is very difficult. Several internet friends who live in NE, AR, TX, MD, GA, OH, MI have said to me, come over here for a while and I'll see if I can find you a place to live. I've been to all of those states and no one could help.  Now at the age of 54 its not only Epilepsy but the hospitals have had me in the ER for Angina (heart problems)  the Hematologist says I'm Anemic and lacking Iron, vit B12 and folic acid.  Then another Dr feels as though many symptoms I complain about are Diabetes type 2 which my mom had. High blood pressure and an Underactive Thyroid gland are also a problem.  Depression is another longstanding problem. If I can't find a place to live soon, with all these medications and the need to frequent Hospital and Dr visits I have no clue as to what to do.

I'm beginning to see why people join cults, gangs, commit suicide and things. Where you reach a point where there seems to be no way to solve the problem, who wants to continue living in the mental emotional pains that are 24 hrs a day.  My support system which was my parents are gone. Not one person other than the internet strangers that I write to as a means of support, but no one in my life or no agency or place to find answers to my problems.  I've written letters to the United Way, Red Cross, Salvation Army, Church pastors, and no response from any of them.  Im' running out of choices or ideas.  Housing which is the most important part of my problem is the issue I need to deal with first. Here in Atlanta they have housing for Elderly but my age 54 isn't elderly to them.  There are Apt buildings for Mentally impaired, but I'm not that.  An apt building for Mobility impaired but thats not me.  An apt building where every resident is HIV+ but thats not me.  Everyone but me has a place.  I have no idea of what to do. Should I break my leg and become mobility impaired? Should I go out and get Aids?  Should I damage my brain and become retarded? I'm just running out of ideas.

I truly wish the Epileptic Foundation was aware of what we go through and in addition to what they are doing at least focus on the issue of Housing. What can a person be, or do if he or she first of all has no residence or place to live?  I may be able to develop or learn certain things, but I cannot do one thing until I have a place to call home.

Hello Mom,

Have you looked into section 8 housing? Unfortunately, there's a waiting list which may be months to yrs long and if she's looking to move soon then looking into section 8 may not be good.

Wishing your daughter the very best. I know how important it is to be independent and try to do things on your own.

Wishing you and your daughter a happy holiday!

  I am on a fixed income and in NYC living on your own is hard. very exspensive. but we have places called called section 8 and NYC housing where rents are not high depended on how much you make. also rent stabilization housing. I'm not sure where you live but here it a few places not many but a few for people on a low budgect. 

People with Seizures don't get a Chance in Society because of the fear of Multi-Million dollar lawsuits.
Last time I had a Job was 1989 I get SSI..

Live with my Parent there's no protection for people in our situation.

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