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Parents of disabled kids thread...

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Replies to: Parents of disabled kids thread...

  • dstarkdstark 33322 replies919 threads Senior Member
    edited July 2014
    Debi, I guess my wife and I are fortunate.

    Our families will never tell us what do. Everybody knows. My wife and I know the most about our daughter.

    The knowing when part... That is to be determined. :)

    Your posts are very helpful.
    edited July 2014
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  • mom60mom60 8178 replies513 threads Senior Member
    The couple I wrote of above researched locations when they decided to retire. They ended up in our area because they found a program that they felt would serve their S.
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  • dstarkdstark 33322 replies919 threads Senior Member
    edited July 2014
    How much should we expect to pay for our kid moves out?

    If my kid moves to a group home, what should I expect?
    edited July 2014
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  • ConsolationConsolation 22893 replies184 threads Senior Member
    His IQ was measured recently as 100.

    That's ridiculous! Or more accurately, it's shocking, and brings home to me how much he is impaired by this illness. Poor baby. I cannot help but see him as the cute little fellow I knew back in the day.

    I hope that something is found that works for him
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  • Mikaylin16Mikaylin16 6 replies0 threads New Member
    DStark

    I don't honestly know how much it costs. We were fortunate that when our son was about 10 years old he qualified for the brand new waivers through medicaid in our state. They are based on disability and not on our finances. Sadly waiting lists are years and years long now in our state. My son qualifies for SSI because of his disabilities. His check is used to pay his rent and utilities etc. The actual payment for caregivers comes through the waiver. It cost us probably about $1000 to $2000 to buy him dishes...pots and pans etc. I would guess in a group home those things are probably already there and you would probably buy things like towels...sheets....etc.

    My best advice would be to look for these programs in your state. Even if you aren't interested in her moving out right now I would get her on waiting lists immediately. That way after a few years when you are ready she will have worked her way up the list. Here the waiver also gives access to things like respite care....etc.

    Generally the higher the degree of disability the more funding that is available. In my son's situation he has 2 roommates that pay their share of rent and utilities. They share staff and even though one is much higher functioning the plans work together to get staff for all of them.

    Debi
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  • NJresNJres 6076 replies189 threads Senior Member
    When we lived in NJ and decided to focus our charitable giving on local organizations, our favorite charity was Our House Foundation, http://www.ourhousenj.org/ for no particular reason other than it was local and friends were involved.

    My wife and I hosted an 11 yr old girl this past year (she lived with us for 6 months) from another country who was in a wheelchair due to a spinal cord injury. She was here for medical treatment which involved multiple weekly trips to doctors and physical therapist. Unfortunately, spinal cord injuries do not heal, and while there is always hope and some promising research on the horizon, she is not likely to regain the use of her legs anytime soon. Taking care of her was a fulltime, 24/7 job for both of us. My wife had to be around to take care of all the personal things I couldn't help with, and I had to be around to carry her up and down the stairs or to the car. She is very smart and went from no spoken English to near fluency in 6 months. Nothing like full immersion! Through her we met quite a few people with spinal cord injuries - parents who were fulltime caretakers to their injured children, both in real life and online, and we gained a new appreciation for what people (parents in particular) go through and will do for their children. For someone living here, I could say focus on the possibilities - there are really almost no limits to what a paralyzed person can do in the U.S. Nearly everything is accessible, and people and institutions are generally accepting. Unfortunately I cannot say the same about her home country, so her future is very uncertain. I would love to see her come to the U.S. for college.
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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    edited July 2014
    dstark - A different case from your D, but we have a mid-twenties S with autism, who is non-verbal and epileptic, and living in a group home. He requires 24/7 supervision and has awake staff. He also goes to a day program, and by PA law clients in group homes are expected to be taken out at pre-ordained intervals, so he also goes on outings suitable to his interests. (If the outings are not suitable, he will make staff miserable....)My other children have mentioned that he gets out more than any of us these days. I am told this is a common comment.

    He visits with us at least once a month and usually more often than that and we arrange our social schedules around his visits. Many families have their children home every week-end. Some bring them home less frequently, but have them stay for longer periods. I think there is probably a limit to the number of nights that clients can spend away from the group home before funding is in jeopardy? We do work closely with the agency as issues arise, and try to visit often enough to get to know staff. In the last year or so, state budgets have been cut and this has meant fewer staff available on week-ends when clients are home.

    In our state the group home is paid for through MR waiver funding. To qualify for waiver funding our S could not have more than a minimal amount of $ in his accounts (2k?), similar to SSI, I believe. Many families will set up special needs trusts, however, with instructions for spending the money for medical and dental care not covered by Medical Assistance, special trips (I have heard of families earmarking funds for trips to Disney, for example), and such. My S owns a burial plot, that had to be reported. We are his guardians for now and approve his medical care, and after we are gone one of our other children might take over if he outlives us. Since my H is still working, he gets medical insurance as an adult disabled child through my H's employer in addition to Medical Assistance.

    There are very long waiting lists for group homes in our state, even if a child is as disabled as my autistic S and parents are over age 60 or in poor health, and families have to be proactive in seeking residential placements or their children will be with them until they are incapacitated or dead.(This includes children who were in residential schools for part of their teens - when they age out of residential school settings, the state will be perfectly happy to return them to their homes unless a parent takes action.) It can help to find an attorney who works with these types of cases. I imagine this gets more complicated if a child does not want to move out - we were nervous, but our S fell in love with his group home from his very first day there.

    After our S was approved for waiver funding, we met with agencies that had openings in their group homes. Sometimes an opening would occur after a client had died. In PA, group homes have a maximum number of four clients and sometimes have just two. We were given a choice of three different homes that had openings when our S was approved for waiver funding.

    I think many parents do have a concern that the personalities of clients complement each other, and worry about this. When my S was growing up, lots of other parents did not want him around their verbal and literate autistic/MR children, but he does have some good adaptive skills. His day program and home have a mix of verbal and non-verbal clients.

    I was told that some religious organizations have set up housing for disabled adults, and that some families have gotten together to buy houses for their children to live in, with supervision funded by SSI or waiver. I do not know how this works in our state, since we went through an agency.

    My S's group home is on a pleasant residential street in a neighboring township. He can walk a few blocks with staff to go shopping or to go out to eat. Neighbors are apparently friendly as well, which I appreciate. Some townships in our county (including my own) are apparently not very welcoming to group homes.












    edited July 2014
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  • dstarkdstark 33322 replies919 threads Senior Member
    NJres, you are a mensch!

    Debi,

    You are right. We probably need to start looking more seriously at homes. There are a couple of organizations out here that are possibilites. We did go on a tour of one group home and the organization wants my daughter. My daughter is so easy going. I think there was too much supervision at that home. Right now, my daughter goes to the store by herself. She couldnt do that at the group home. Then again the group home is safer. There is a trade off. Safety for a little independence.

    Do you pay for your son's clothing? Haircuts? Most incidentals? I guess if you are buying sheets and towels and pots and pans, you are still financially involved even though your son lives in a group home.


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  • dstarkdstark 33322 replies919 threads Senior Member
    edited July 2014
    Frazzled2thecore, I just saw your post and love it.

    You gave me a lot to think about. How special needs trusts fund is one of the things I wanted to know. My daughter has been a client at the regional center that helps handle housing. I cant believe my daughter would not qualify for financial assistance.

    I am happy the move is working out for your son and for your family.


    Non verbal with epilepsy...that is tough. Is the epilepsy controllable with drugs?
    edited July 2014
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  • Cardinal FangCardinal Fang 18756 replies160 threads Senior Member
    dstark, I urge you to talk to a good estate lawyer about special needs trusts.

    As I understand it (and please correct me, other parents, if I got it wrong) an adult child can't qualify for certain disability services if they have too much money. The parents can't just leave their estate (or a portion of it) to the child in the usual way, because then the child would become ineligible for their services. But if the money is locked away in the special needs trust for the child, then the child would still be eligible for the services, and they or their trustee would be able to use the money in the trust.

    Our son isn't getting any government disability services, so we just set up a regular trust for him in our estate planning.
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  • Mikaylin16Mikaylin16 6 replies0 threads New Member
    In our state the limit for amount of money a person can have without losing funding just went from $1500 to $2000. If we left money directly to our son he would lose his funding and since his monthly caregiving bill alone is nearly $28,000 he would blow through anything we could leave him very quickly. We will be working on a special needs trust very shortly.

    He pays for his own incidentals and clothing and haircuts etc. He pays for his own meals when they go out to eat and pays for his own bowling and movies and such. He pays his rent and utilities. He pays for any food above the amount of Foodstamps that he receives. All of this is done through his monthly SSI check. Because he shares rents and utilities with 2 other people these things are affordable.

    He also pays for his own renter's insurance. We have contributed a fair amount of money decorating his home. It is important to me that it be homey and not resemble a facility. That isn't always possible depending on the needs and behaviors of the people involved. For birthdays and Christmas family members often buy him new clothes....new small appliances to replace aging items...and restaurant and other business gift cards as presents. We pay to keep primary medical insurance in addition to medicaid for him so that he will have better options and choices for medical, eye and dental care.

    He is actually not in a group home. He is in what is known here in this state as "supported living". Group homes here are established homes owned by an agency that generally have 4-8 residents and keep 24 hour staff at all times. We actually looked at and located a house for rent just like we would if our non special needs daughter was moving out. His name is on the lease.We were able to approve and match him with appropriate roommates. We were fortunate that when his friend decided to move in she had a connection through church to a person with a house he was remodeling to rent. He and his wife are wonderful people and they made the house handicap accessible while they were already doing the normal renovations. They widened doors etc.

    Each of the roommates contributes furniture as needed. They all work in the sheltered workshop. One of his roommates makes a little money that way. Our son doesn't generally make more than a $1 in a two week check. The higher functioning individual uses public transportation to and from work and the other two ride in staff's cars back and forth to work. There are supported living homes that do not have 24 staff. The residents don't require someone 24 hours a day and it is structured to their needs.

    It is complicated to get and keep all the right pieces in place but very much worth the effort for our family. We can visit at any time and we generally take him out to dinner and sometimes bring him home for a few hours every Sunday. He as well as his roommates and staff spend all holidays with us and our extended families. We have become one big family. He is happy and healthy and when he is doing well we can focus our energies on raising his sister and having our own lives. For us right now it is a win-win situation and worth the effort we put in to keep all the balls juggled and in the air :-)

    Debi



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  • MaineLonghornMaineLonghorn 40395 replies2207 threads Super Moderator
    That's ridiculous! Or more accurately, it's shocking, and brings home to me how much he is impaired by this illness. Poor baby. I cannot help but see him as the cute little fellow I knew back in the day.

    I hope that something is found that works for him

    @Consolation, thanks! I know, sometimes I try to remember what he was like at age 17. The main word I used to describe him was "enthusiastic." That summed him up - enthusiastic about school, running, music, and life in general. Now every day is hard for him. Now the word that comes to mind is "warrior." He know he is fighting with all his might.
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  • frazzled2thecorefrazzled2thecore 1097 replies1 threads Senior Member
    edited July 2014
    Cardinal Fang - you are absolutely correct. Each type of service has its own threshold - S had to have less than 2k for waiver funding, but vocational rehab has a much higher threshold.

    We do continue to buy him occasional items of clothing as gifts, and we take him out to eat when he is home with us. (When he was little, we never imagined that we would ever be able to take him to a restaurant - this was something he initially learned and practiced in special education programs.) Staff takes him shopping for inexpensive holiday presents for us.

    dstark - for now, the epilepsy is under control with medications, but the medications can have some very unpleasant side effects that he cannot report and they have needed lots of tweaking. He has some other medical issues as well and is on a cocktail of meds. We are dependent on his staff to make accurate observations, that we can confirm or not when we have him home with us. Often it is hard for anyone who is with him on a daily or near-daily basis to discern small but incremental changes or trends. We are very grateful when observant staff has noticed that a medication has been making him worse, and have voiced concerns. (I really think that physicians and others who work with this population, or similar populations, would benefit from having spent part of their training as personal caregivers.)

    One challenge we have had is that new staff will sometimes not know where and how to support him in areas where he is independent and will rush in to take over small tasks, or allow regression in areas such as toileting without asking questions. (He is independent with toileting, but this took many years of instruction.) That is why I make it a point to try to hang around at his house sometimes, especially if there is new staff, and see what they are doing for him that he could do for himself. If I suspect they are doing too much, I will "show, not tell" how he is able to manage some tasks on his own by making requests of him in their presence. This can work the other way, too - he has become more independent with some housekeeping skills since living in the group home. It is helpful that many who go into this line of work seem to have family members with disabilities; there is lots to be learned on the job here, that is never taught in any kind of school.

    If he were higher functioning or verbal, perhaps they would expect either too little or too much. Once a year when we go over his support plan we go through a detailed questionnaire that lists many adaptive skills and asks is he is interested or capable of doing these things. Some, such as managing money or relationships, participating in a variety of activities including paid and competitive employment, and voting, seem meant for much higher-functioning individuals.

    Some families with low-functioning children find it very painful to have to answer these types of questions, since it is rubbing their noses in everything that their children will never be able to do. I can see however how this poses a dilemma for parents whose children are higher-functioning, though, since admitting to too many skills could disqualify them from getting supports. If there is no concern that a high-functioning individual will be cut loose from supports before they are ready or if there is no mainstream job or housing situation that could accommodate them, the questionnaires would seem to be working well to ensure that nobody ends up in an unnecessarily restrictive situation.

    Also, many of the clients in other group homes and in the day program are individuals familiar to S from his special education programs. He does have an active social life among this group as they are often taken to visit each others' houses and celebrate holidays together, and these folks have become his de-facto extended family, people who enjoy being with him and will willingly spend time with him, without being paid or receiving public recognition for doing "good works" or feeling they are making sacrifices to be with him. Some of the elderly clients are former litigants from the Pennhurst group or have been de-institutionalized as the state has closed large facilities, and many of these grew up with little contact with their immediate family.

    I can definitely relate to the concept that an entire family becomes "disabled" under these circumstances in ways that are barely recognized even by professionals who spend a lifetime working with this population. Perhaps this is a topic for another thread.
    edited July 2014
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  • dstarkdstark 33322 replies919 threads Senior Member
    Frazzled2thecore, you can write about whatever you want to write about in this thread.

    Glad to see the drugs are controlling the epilepsy.

    Lots to think about.

    One reason we moved where we did is the location is so great for my daughter. My daughter can walk alone to a grocery store, drug store, subway, other restaurants. I dont see an area around here as comparable.

    I guess the choices are we can buy a place for her.. Has to be somewhere else and because everything is exoensive.

    My wife and I can move and give the place to my daughter. We might do that in 30 years. :)

    She moves to a supported home.

    We have a special needs trust which will be funded when my wife and I are dead. I have no idea how much we have to fund the special needs trust and this impacts my wife and my decision making. This effects more than estate planning. How much can we spend on ourselves and make sure my daughter is takem care of for 70 years?

    I also have two other kids and how much we decide to leave to the special needs trust impacts them. My special needs daughter comes first .

    From reading these posts, I get the idea that if my daughter moves to a supported home, ssi will cover her housing and food (unless she eats out). My wife and I are going to cover everything else.
    This is similar to the way things are if my daughter lives with us. You get a bump in ssi payments if you rent.

    I know this varies.. But how many roommates are ideal for a social person?

    If I do buy a place, can I rent out the place to a couple of people like my daughter and collect some rent.

    I guess I could ask Lifehouse. :)
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  • HImomHImom 35422 replies396 threads Senior Member
    One thing I learned when attending hearings for other subjects was that "pot" was useful in controlling seizures of some epileptics that had not been successfully controlled by any other means. I was surprised to learn that and am glad our state does allow the use of medical MJ, (even tho I question the disproportionate Rx in HI for young males who don't appear to have any medical conditions).
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  • BunsenBurnerBunsenBurner 40387 replies474 threads Senior Member
    Dstark, my heart goes out to you and all other parents of children with disabilities - godness, we are supposed to leave this world without worrying about what is going to happen to our kids.

    The new Microsoft CEO has 2 children with some sorts of disabilities. He does not talk about that much, but I think their disabilities could be more of a physical nature since the family apparently belongs to the Little Bit - it is a place where disabled kids interact with horses which have been found to have a therapeutic effect: http://www.littlebit.org/

    Another local Seattle - area resource is the Northwest Center, the non-profit that provides employment for people with disabilities. I donate to them periodically even though I have no disabled persons among my relatives. NW Center partnered with the county and the YMCA and took over the care of our public pools amidst the doom and gloom of the post-Sept 11 economic crisis, and they did a good job.
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  • musicmommusicmom 2470 replies89 threads Senior Member
    We still live in the large town where our DD was born. It is all she's known. We'd like to retire here if we can keep up with th 'RE taxes. It is a relatively safe, walkable town which is good for our daughter.

    She is 25 and at the bottom of the residential waitlists through the state. Maybe 10-20 years long.
    Meanwhile, we look at other options. I've gotten her on the waitlists for 6 public affordable housing complexes in out town and nearby towns. One of these could come open in 2-4 years. The plan would be for her to pay her affordable rent with SSI, use food stamps, use her state support budget for staff to assist her.
    I'm learning my way through it, stumbling along.

    Another parent is seeking roommates to share home and expenses with his daughter in home her purchased for her. Very lovely, safe area. Families would hire and supervise staff. Drawback for our D is lack of transportation to and from her workshop. Also, it would be a LARGE stretch for us to buy into the house.
    Housing is such a big issue.
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  • Cardinal FangCardinal Fang 18756 replies160 threads Senior Member
    edited July 2014
    Equine therapy is used for mental disabilities as well as physical disabilities. Without knowing anything at all about the new Microsoft CEO or his family, I'd put my money on his children having autism spectrum disorders, because ASD is more common among children of engineers and technical types. Not that it matters-- I hope that equine therapy is helping his kids, and the other Little Bit clients, no matter what their disability. Too bad Little Bit is presently full and not able to accept more clients.
    edited July 2014
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  • dstarkdstark 33322 replies919 threads Senior Member
    edited July 2014
    BunsenBurner, thanks.

    Musicmom, after writing and reading on this thread, I decided to go look at two houses that were for sale. I was not blown away. I am going to talk to a non profit that deals with housing. A 10 to 20 year waiting list? Maybe 10 would be ok.

    I have to see what the options really are.

    Housing is a big issue.
    edited July 2014
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  • Mikaylin16Mikaylin16 6 replies0 threads New Member
    Frazzled 2 the core

    Your approach to caregivers and such sounds a lot like mine. One thing people need to understand when they are considering placement is that without family involvement your family member will have a greater likelihood of being abused or just merely being housed rather than living an enjoyable life to their fullest potential. Sometimes no matter how hard you try things can still happen but you decrease the chances by being a highly visible presence in their lives. I tell anyone who asks me not to let the agency manage your family member's funds. It is a royal pain in the backside and a personal expense to keep track of and account for their money (we have to present records before a Judge every two years requiring a lawyer...plus fill out the annual SSI payee statement) but I have seen people do without just because agency people didn't care and didn't want to be bothered to cut a check when needed. They will never be given that much free reign with our son as long as we are capable.

    We requested and politely insisted that staff in the house receive at least 3 sessions of direct hands on instruction in the house before staff are left alone with him. Initially the agency felt "paper training" (training from your child's charted notes) was sufficient. I think paper training is for dogs...NOT people. My son on paper and my son in person could not be any more different. I also insist on meeting the new staff person during one of the training sessions to get a general impression of them. We have the final veto. I use the veto wisely. I have kept people our of the house who were druggies or abusers. I try not to veto unless necessary but I don't hesitate if needed. I get the names ahead of time and I google them. I look for them in the local paper and on Twitter and Facebook and sex offender registries. If you are unwise enough enough to put it out there I will do everything I can to find it. Our staff lovingly refer to me as CSI Debi LOL. They appreciate that I do it. Bad staff are bad for everyone! Don't expect that because the agency did a background check they will all be good people. Sometimes they are bad people who haven't been caught yet. We often have to remind agency workers that they don't leave their 4 year olds with strangers and we can't be expected to do it either. They don't get that sometimes.

    I have always said that my son's disabilities were not what made life difficult. It was the people his disabilities brought into our lives. Doctors who graded me as a parent when others with typical kids had no one holding them accountable for a 1 Oz weight loss (and yes that really did happen). Therapists who made me feel guilty that I couldn't do 2 hours of therapy a night plus work plus keep house plus be a wife and daughter plus have even a minute for myself. Teachers who gave no more than the barest minimum and made me fight to get that.....just to name a few.

    I did a segment on a training video for my son's agency. It was from the viewpoint of a parent regarding how what they do has far reaching impacts....from the client to the parents..to the siblings...to the grandparents all the way down to the parents' employers. I explained they could be a force for good or for bad. This video is shown at orientation to all new incoming staff.

    Anyone who considers this should be prepared to stay involved if at all possible....it breaks my heart at how many people are dumped and rely on the kindness of strangers who sometimes aren't so kind.

    Debi
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