Parents of disabled kids thread...

Parents Forum Parent Cafe
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<p>Frazzled 2 the core</p>

<p>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. </p>

<p>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.</p>

<p>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.</p>

<p>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.</p>

<p>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.</p>

<p>Debi</p>

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<p>Someone asked about what a good number of roommates would be for someone that is social. I am not an expert by any means but from my experience it isn’t as much about numbers as it is carefully considering abilities and behaviors. Four high functioning social individuals might enjoy all living together and work out well. Three individuals with high behaviors may feed off of one another and offer few calm moments in a house. Two people in wheelchairs may limit outings unless there are 2 staff members available. A person who has significant physical and mental disabilities may not be a good match with someone with significant behaviors. We considered this arrangement at one time. The father of the other boy declined. His son had a history of tipping wheelchairs when angry and he didn’t want this to happen to our son. </p>

<p>In our son’s house there is a wide variety. Our son is 31 years old and is in a wheelchair. He can communicate but is lower functioning. One roommate is 60…much higher functioning (for now)…has dementia and walks with a cane. I love having this guy in the house because I can ask him how things are going and he can tell me. The other roommate is a female who is 21 years old. She walks with a limp and needs balance assistance occasionally. She is higher functioning than our son but still much lower than the 60 year old. If you have highly sexual individuals it might not be a good idea to mix the sexes. It works for us because two of the three have no real clue about sex and the other is not sexually abusive or aggressive. </p>

<p>This balance works well for us and I probably wouldn’t add another person or replace a person if they left with another person in a wheelchair. It would be very limiting when it came to outings and physically tiring on staff.</p>

<p>These are just a few of the things that I would think about personally in organizing a situation like this.</p>

<p>Debi</p>

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<p>Mom2collegekids, I am going to use what you wrote in the retirement thread for my disabled kid. I like it. :)</p>

<p>I am playing now…nothing is decided and I am guessing. </p>

<p>"prop taxes $7000
home insurance 2000
elec, gas, water, sewer 4800
internet cable/satellite 1200
home repair (inside and out) home furnishings/appliances repair replacement 6000
cars (insurance, gas, repairs, replacement, registration) transportation 500
health costs (co-payments, etc) Rx’s (yikes…these can be high) 3600
dental costs eyeglasses, exams 1000
food 7000
clothing 1000
HOA or any services (lawn, etc) maids 5000
gifts/holidays 500
entertainment travel (going to see those grandbabies!) 2500
Haircuts 500</p>

<p>Ok I get $42,600 </p>

<p>If I buy a 3 br place for $600,000…I am thinking these can be my daughter’s costs…I am not saying I am doing this…
Now we rent out 2 rooms…</p>

<p>That should cover prop tax…home insurance elec, gas, etc. Subract 13,800…from 42600 leaving $28800
SSI covers food…subtracting $7,000 leaving $21,800.</p>

<p>Could have renters chip in and help for elec, gas cable tv and intenet cutting costs another $4,000. Going to ignore that for now…</p>

<p>Anything stand out terribly wrong? </p>

<p>Now what am I paying now for her with her living with me?</p>

<p>Transportation 500
Health costs 3600
Dental etc. 1000
Clothing 1,000
Gifts entertainment haircuts 3500
=9600</p>

<p>Those rents for the house better be higher than I think…</p>

<p>21800-9600= 12200 more moving out.</p>

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<p>Mom2collegekids, I am going to use what you wrote in the retirement thread for my disabled kid. I like it. :)</p>

<p>I am playing now…nothing is decided and I am guessing. </p>

<p>"prop taxes $7000
home insurance 2000
elec, gas, water, sewer 4800
internet cable/satellite 1200
home repair (inside and out) home furnishings/appliances repair replacement 6000
cars (insurance, gas, repairs, replacement, registration) transportation 500
health costs (co-payments, etc) Rx’s (yikes…these can be high) 3600
dental costs eyeglasses, exams 1000
food 7000
clothing 1000
HOA or any services (lawn, etc) maids 5000
gifts/holidays 500
entertainment travel (going to see those grandbabies!) 2500
Haircuts 500</p>

<p>Ok adding up those numbers I get Costs of $42,600.</p>

<p>If I buy a 3 br place for $600,000…I am thinking these can be my daughter’s costs…I am not saying I am doing this…
Now we rent out 2 rooms…</p>

<p>That should cover prop tax…home insurance elec, gas, etc. Subract 13,800…from 42600 leaving $28800
SSI covers food…subtracting $7,000 leaving $21,800.</p>

<p>Could have renters chip in and help for elec, gas cable tv and internet cutting costs another $4,000. Going to ignore that for now…</p>

<p>Anything stand out terribly wrong? </p>

<p>Now what am I paying now for her with her living with me?</p>

<p>Transportation 500
Health costs 3600
Dental etc. 1000
Clothing 1,000
Gifts entertainment haircuts 3500
=9600</p>

<p>Those rents for the house better be higher than I think…</p>

<p>21800-9600= 12200 more moving out.</p>

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<p>In CA, people should be able to access a group home or supported living (apartment, house, shared housing) with support, if that is what they want. As described above, supported living is more work for families, but more flexible and individualized. Were I to be setting services up at this point for my sib, this is what I would be looking at. When placement was first being considered for my sib, my kids were too small, and I was having health issues. Due to my own bandwidth limits, we chose a group home situation (which has turned out to be lovely, bthw). Some people even (depending on zoning, space, and money) build a smaller “granny” unit behind their home for one or two people, which they then use for supported living. Obviously, public funds wouldn’t be used for building an addition, but public funds would be used for services to support person.There are supported living agencies that help with the setting up of roommates, etc. Some of them would be paid (instead of “staff”). </p>

<p>CA residential services for adults are funded the state DDS/Regional Center funds (includes federal medicaid waiver monies) in addition to the person’s SSI. There is no additional charge for adults; parents of minors have a share of cost on an income-based sliding scale. There is not a 10-year wait, but there would almost always be a wait for the right group home. There are also a few other places that I know of, like the Camphill Community in Soquel that are marvelous, if it is the right fit. Has ggrc not been helpful? The new “self-determination” program should be even more flexible than supported living, but will begin as a pilot. Some centers do not like to have parents and young adults visit group homes unless they are ready to place, but others understand that it is important for families who are beginning to think about this to begin to look at real places to get a sense of the range of possibilities. But, ggrc should be able to give you names of homes to look at if you are interested or names of supported living agencies as well, even if you are just beginning to test the water.</p>

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<p>Mamita, you answered many of my questions. Thanks.</p>

67

<p>Is there a southern CA version of GGRC?</p>

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<p>Yes.</p>

<p><a href=“Regional Center | Directory and Information Guide for Individuals with Developmental Disabilities”>302 File moved;

<p>There are also offices in other places besides the ones listed. For example, ggrc has an office in Corte Madera.</p>

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<p>Yes, dstark is correct. Here is a list of the 21 Regional Centers in CA <a href=“http://www.dds.ca.gov/RC/RCList.cfm”>http://www.dds.ca.gov/RC/RCList.cfm&lt;/a&gt; and of the state level agencies for people with developmental challenges across the US <a href=“http://www.nasddds.org/state-agencies/”>http://www.nasddds.org/state-agencies/&lt;/a&gt;. Finally, vocational rehab lead agencies across the US: <a href=“http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_cd=SVR”>http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm?category_cd=SVR&lt;/a&gt;&lt;/p&gt;

<p>Even though often people are already connected (in CA) with their local Regional Centers, they may not be aware of their role vis-a-vis adults, since the role when kids are in school is fairly limited to a support role, with minimal funded services. Or, some people had kids who did not qualify when they were younger, because the nature of their needs was not clear, but who do qualify later. </p>

<p>Best to all of you </p>

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<p>“Or, some people had kids who did not qualify when they were younger, because the nature of their needs was not clear, but who do qualify later.”</p>

<p>That is such a good point. I recently saw a young man about three months shy of his 18th birthday, who his grandmother said had been denied services around age 8. I suggested she try agajn, becuase it was c,lear to me that with the right regional center services, he would not need to be on the butt load of psychotropics he was on. It turned put they needed a letter from me, regarding why he should be re-assessed, and while he was again denied, someone on the team help grandmother appeal, and he was granted services just weeks before he would have turned 18, and it would have been too late!</p>

<p>He was one of those kids on the edge, that probably “passed” at 8, but at 17, his limitations were pretty obvious. </p>

<p>I don’t recall ever having been asked to write a letter to get a regional center assessment before, but I don’t recall seeing a 17 year old being granted services for the first time , either. </p>

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<p>Well, we didn’t go through the formal eligibility process until our DD was about 15 yrs old, though it was apparent she had special needs from age 2.
I think our school district was quite supportive in our case, including paying for an out of district school from age 12 to 21. Under age 21, the state considers the family’s income so she was not eligible for services at that point. As she grew closer to needing adult community supports, we realized we needed to get that official state evaluation completed. It didn’t seem that urgent at the time. Now, looking back, I’m appalled we were so relaxed about it!</p>

<p>Shrinkrap, that young man and his family are incredibly fortunate you advised them!</p>

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<p>Thank you! I agree (hee hee), but they didn’t . I ended up terminating with them, because among other things, grandmother accused me of billing the insurance for a day he hadn’t been seen. This, in SPITE of the fact that we quibbled about whether she should have to come in for refills during the appointment in question. </p>

<p>BTW, many of the kids I see benefit from in home behavioral interventions during their early years, and the parents from respite services. I guess I am seeing the ones with significant behavior problems. </p>

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<p>Great thread and what a wonderful group of people who have posted here. </p>

<p>I have a disabled sister (in her 40s) who is severely disabled and functions at a very low level. She has lived in an apartment in a building that was converted completely for the disabled. I believe, as Debi described, it is called ‘supportive living’. She is entitled to 1:1 staffing by the state (CA) so is (appropriately) never alone. She lives with two other disabled women in a 3 bedroom apartment. She used to be in a day program but needed to leave. Quite awhile ago she had a job of sorts but that fizzled away as well. Her staff take her out every day and she is a happy person. As someone else said, you don’t know what you don’t know.</p>

<p>My sister is financially supported by the state. It covers her housing, staffing, medical care (medi-cal). She lives near my mom who checks on her at least weekly. My mother has found few occasions to provide feedback about less than desired care and, when she has, it’s never been anything serious (mostly minor hygiene issues). Thus, I would hope that, when/if the time feels right, people who have adult kids still home might consider exploring group homes or other housing options where you’d be able to visit as often as you like and, of course, see for yourself how your child is being cared for. (I wrote this before reading the entire thread – mamita did a wonderful job describing my sister’s situation and how it works in CA).</p>

<p>Several people upthread mentioned a special needs trust and my understanding is similar to CardinalFang. I would encourage people to check into what their state makes available, particularly in CA which is the only state with which I’m familiar. My mother has made it clear that my sister can not be left any assets as she could lose her housing, staffing, medical coverage, etc. which took my mother years to put in place. She does supplement in many ways, from clothing to items for the apartment to holiday gifts for the staff. My sister would be okay without being supplemented in this way but it is my mom’s pleasure to do so and is not a burden.</p>

<p>My mother considered having my sister undergo a tubal ligation years ago and she was told that, once my sister turned 18, she didn’t have the right to make that decision for my sister. It sounded like it would have been a very tough sell prior to age 18 as well. (My sister functions at about a 3 year old level.)</p>

<p>I will be responsible for my sister when my mom is no longer here. I’m not in the same city but am working with my mom to get up to speed.</p>

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<p>Collage1, thanks for posting. Nice to read other people’s experiences.
The best to you and your family.</p>

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<p>Shrinkrap, sad the young man lost out on your help. I have to say we have been EXTREMELY blessed with professionals in our daughter’s life. The staff at her special needs school practically lived there, running after school clubs, musicals, intramural sports, dances, even sleep overs in the gym so parents had respite one weekend a year. Speech therapists, occupational therapists, social workers, psychiatrist- all skilled and caring.
Well, OK, the one psychiatrist was just a little nutty! I don’t know if we’re just lucky or the caliber of providers in suburban NYC is atypical. </p>

<p>Collage1, good to hear that your sisters care has been satisfactory. I actually have visited a small group home nearby in a very residential setting. Four women with 24/7 staff. Residents pay with SSI and state budgets.
I could see our DD in such a home. She is probably capable of slightly more independence, like a supported apartment with staff checking in each day. That seems to be the new norm being promoted around here.
We shall see. Thanks for sharing your family’s story. It helps me see our DD s future and to be more optimistic!</p>

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<p>When I read your stories, other parents on this thread, I’m reminded that I should count my blessings. Fang Jr’s disabilities are way way less severe than other kids being discussed here. You all are saints.</p>

<p>I’m thrilled to say Fang Jr got a 10% raise today, and he and a friend are going to try to find a local apartment. We’re a bit nervous about him living independently, because his executive function difficulties are considerable, but we think this is a good step. He’ll be close by and we can check up on him.</p>

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<p>CF, that’s great. </p>

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<p>Did this thread get pinned to the top of the cafe forum? Pretty cool.</p>

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<p>So, our daughter is not sexually active at 25. Has male friends and now one who may develop into more.
She’s had the basic sex ed classes in her special ed school and I’ve had numerous talks with her using appropriate books. Hard to know how much she really understands. She can parrot back the names of body parts. She knows a baby is made from cells from a man and a woman. She supposedly knows how they meet up. But just like with typical young adults, she’s kinda quiet with me on the topic.
I’m NOT trying to promote something she isn’t ready for (and may never be).
I really DO want to give the the knowledge to protect herself, including the right to say no.</p>

<p>There’s a counselor at our planned parenthood who supposedly has specific training and experience with developmentally disabled people regarding sexuality. Thinking about arranging this for our daughter.
Any thoughts or advice?
How are you addressing this if you have a special needs child?</p>

<p>Any help is appreciated!</p>

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<p>Musicmom, you are going to help us. You are further along. :)</p>