Housing Options for Uncontrolled Epilepsy

Re: Housing Options for Uncontrolled Epilepsy

Submitted by pkdz on Sat, 2013-03-02 - 23:55

Here in Wisconsin, we have Aging and Disability Recourse Centers.  There are workers who help families figure out options for housing, income support, in home care, etc. 

http://www.dhs.wisconsin.gov/ltcare/adrc/

Not sure where you live.  Good luck to you and your family.

Re: Housing Options for Uncontrolled Epilepsy

Submitted by 3Hours2Live on Sun, 2013-03-03 - 06:07

Hi SaberTooth, I was in much the same situation in the mid- to late-1970's in California, except I didn't know then that epilepsy was an impairment for me. Working the streets was the source of income, and housing was a more dangerous option than homelessness (one then touted "spectacular" option was a group of programs involving Rev. Jim Jones of The People's Temple, which soon gained infamy). The allure of facets of my epilepsy added to my margins, and I soon had enough leverage to return to university; that's when having to have a home again became a problem of "residency". My parents having moved to California then became a blessing, and another bureaucratic curse. Using my parent's address solved the residency requirement, but my parent's income levels were used to disqualify me from "independently" attending university, so the prices were high and the commutes long and many, with all the housing programs for students reserved for those who really needed such, lacking rich parents within commuting distances (mine was about 120 miles in total a day, and with my increasing age, zeroed out my margins shortly after magna cum laude graduation and fruitless career opportunity opening search (which led to official verification of epilepsy)). With the S & L's economic bubbles then bursting, my parents were soon bankrupt too, so I got to meet the definition of maintaining a seperate household from my parents at the same address, and getting maximum living expenses under SSI (presently, about $860 US dollars a month). With the then following dot-com economic bubble, my parents bought a lesser new house in a blighted Northern California area, and allowed me to finance my 1/3 of it added to the my expenses to maintain the status of households. That bubble then popped, another bankruptcy, my father died, and mother wanted leverage for the note's life's weighted value of my father's 1/3. Bush's Greenspan Bubble then inflated house values about three-fold, another popped bubble & another bankruptcy with rock bottom house values, and now I'm paying a full half, which is a little more than the current CraigsList listings for equivalent room rentals in the nearest university town. Living with epilepsy without a facade from a hypocritical prejudiced landlord (and such sharing tenants) is worth paying a premium to the equivalent rent. While the 2005(?) USA Deficit Reduction Act is still neutralizing more concepts of joint tenants, living trusts, etc., catergorically needy adult children living in the house in California still have somewhat protected homestead property rights for themselves and/or from their parents when their parent(s) no longer reside in the house (whether from being in care facilities or being deceased). Mandatory reverse mortgages are probably the next planned robbery to save the too big too fail financial institutions. All the "live indepedently" programs I've looked into over the last 25 years always had the tell-tale toxic-do-gooders in the woodwork. Some of the programs included mandatory work with little pay (always called a nice name like "training" or "enrichment" programs), and some go as far as to sieze most all disability checks, even beyond the mandatory delivered $40 a month left for an individual's incidental expenses. Two programs were busted and fully closed in the last decade locally, one for using the clients to launder controlled prescription drugs, and one for using the facilities to incinerate toxic industrial garbage on the rehabilitation farm. Shared subsidized housing programs are always shutting down and reopening, and sometimes claiming to give former tenants priority to compete with the higher rents and greater disincentives of any return (as if the higher crime rates weren't enough). My type of epilepsy (temporal lobe epilepsy with Geschwind Syndrome) fits nicely with Ivory Tower Academics and tons of books (with even more on the internet), so few otherwise practicalities toward non-essentials are desired. My parents were never interested in why there are so few translations of "The Mangy Parrot", nor more editions of "Dreaming of Cockaigne", so, few problems. Toxic-do-gooders will attempt to ban everything not conducive to their own direct control, and that is hostile to any intellectual independence subjected to their manipulating environment usually phrased like "independence with responsibility" (not from, but to, the do-gooder). Medical concerns with my epilepsy don't outweigh the drawbacks of fully embracing the Praetorian Guard nature of many medical providers lusting after any haphazardly available pieces of lucre in serviced housing facilities. Tadzio P.S. The available snafu of estate recovery under parent's with disabled adult children in California is briefly noted here, while other sources cite enlarged protections for those living in the home during the parent's events into Medicaid, after Medicare and private insurances: https://docs.google.com/viewer?a=v&q=cache:4s6lX0NpyBAJ:www.dhcs.ca.gov/formsandpubs/documents/dhcs9059_er_broch_en.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESiwaOm5IBys_NiD8ioIFmsPMYPl2rC68Csdp33cXyKdc0EGxe4g13SG1tia1fnI_rirl1r5DNsEMk2wsG3lFZcKE6yq5OhxCzg-GAfs-SqQxfP63lWzFIeL0rUHUfky4LGdLZ23&sig=AHIEtbRYdwJ_uwdDwMD7U-VxGXXjUOPgHg Most States have similar requirements, while other Western countries are at least rumored to protect direct family relatives better.

Re: Housing Options for Uncontrolled Epilepsy

Submitted by Sisterhasepilepsy on Sat, 2013-05-18 - 14:16

My sister is 47 and has had uncontrolled epilepsy all of her life. She lived indepently and worked for a few chaotic years in her 20's with lots of ambulances called by well-intentioned people whenever she had a gran mal seizure in public. that still happens. She has had several brain surgeries, vns stimulators, and most epilepsy medications -- she still has gran mal seizures several times a week and has "screaming" seizures in which she screams at the top of her lungs until the seizure is over. A result of the brain surgeries was to remove one-half of her vision (in each eye - literally removing that part of the brain). She fell and hit her head causing cerebral hemmoraghing akin to a stroke, requiring a four month nursing home stay and leaving her unable to read or write or use one arm. She now lives in senior housing in my parents' town because they bent the age rules for her due to her reduced functioning. My parents visit her two to three times a day to deliver medicine and she gets Meals on Wheels three times a week. But, she is lonely and socially isolated and depressed. My parents are getting older and have medical challenges of their own. She attempted suicide using old medication she had saved leading to psychiatric hospitalization. A side effect of one "new" epilepsy medication several years ago made her psychotic which adds to her medication load (now with anti-psychosis medication). these two factors have added a mental illness overlay to her diagnosis. This is relevant because it meant when she broke her ankle recently and needed another nursing home stay for a few months to recover and regain walking function, very few facilities were willing to accept her combination of epilepsy and mental health challenges. Whenever my parents have tried to explore assisted living housing settings for her over the past 20-30 years, the options are bleak. She lived with my parents for years, but as you point out, they want her to get used to functioning more independently so she is prepared (and her siblings are prepared) for life without my parents. Her current set-up, except for the social isolation, seems pretty good. She is very lucky that my parents live in a town with excellent senior housing options (not assisted living -- but low income housing for seniors that is clean and relatively safe), And that they were willing to make that available to her though she is otherwise too young to qualify for it. But, the housing project is full of people in their 60's, 70's and 80's who have been welcoming. Over the months, as the seizure events continued, the welcome is less and less warm. I wish there were a community somewhere, of people with epilepsy who understand epilepsy, with organized social interaction like in a good nursing home or assisted living facility but with people her own age where she could live. If I had some money (both to set this up and to be able to not work to support my own family) I would create someplace like that. I suspect there are hundreds or thousands of individuals living life with the same frustrating challenges, with the same courage and dignity that my sister tries to bring to her life. Their parents, like my parents, provide multiple layers of support as long as they can. Then it is all up in the air unless siblings step in. As far as I can tell, there is no medicaid/medicare coverage of nursing home care when the functioning level for the person hovers between dependent and independent. I think the reality is that she will age into a nursing home setting -- not a great nursing home, more likely the last resort nursing home that accepts more complicated medical scenarios. If anyone reading this is aware of group home or assisted living settings for people in their 20's, 30's, 40's and 50's with epilepsy, who are smart, somewhat intellectually active individuals facing the many physical and emotional challenges that frequent gran mal seizures cause, I would love to hear about it. When I try to research it on the internet, I really don't find anything helpful.