Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 I have but DH has not, he thinks I am being morbid and paranoid. NICE! This is posing a bit of a problem on the will production front!! VERY frustrating! -Charlotte planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 I don't think it's morbid at all. I think it's responsible parenting, and I congratulate you for doing it. Anne -- planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 With Caden's recent diagnosis, I have had all kinds of thoughts running around in my head. Will he be able to function on his own, what kind of life will he have, what happens to him if we weren't around to take care of him. What happens to him in his adult life, after we are gone, if he isn't able to care for himself. We had spoken to family about godparents before, but that was before his autism diagnosis. I'm sure they would still care for him as a child, but what about into adulthood. What became a commitment for a few years may have just become a life long commitment. I know I am jumping the gun, but I can't help it, I guess it's just the eeyore in me, I'm the eternal pessimist. These thoughts are just crushing, I know I don't want him to end up in a home some where, I want him to be with people that love him as much as we do. Does anybody have plans for their childs adult life, or life after mommy and daddy. What can be done to insure proper care for them. I'm not rich by any stretch of immagination, so It's not just a case of opening a trust fund, or even one of buying more insurance, the funds just aren't there for that right now. Thanks W. From: Anne [mailto:Lady_Anne76@...] Sent: Wednesday, March 02, 2005 3:34 PMAutism and Aspergers Treatment Subject: Re: planning for the future I don't think it's morbid at all. I think it's responsible parenting, and I congratulate you for doing it. Anne -- planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 MetLife can to a recent Autism Society meeting. They have a special branch that handles planning for special needs kids - called MetDesk. Call MetLife and ask for the MetDesk. There are a lot of considerations with trusts and guardianship and care providers, etc. Becky planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 MetLife can to a recent Autism Society meeting. They have a special branch that handles planning for special needs kids - called MetDesk. Call MetLife and ask for the MetDesk. There are a lot of considerations with trusts and guardianship and care providers, etc. Becky planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 I feel for you! I have the same worries myself, I have often thought about this. How is he gonna go to collage, and live on his own, or perhaps a family? It seems impossible to me. Then I keep thinking will he not want to leave home and live with us forever. I don't know! I'm afraid of this situation. He's already 13, time flies fast. <sallen@...> wrote: With Caden's recent diagnosis, I have had all kinds of thoughts running around in my head. Will he be able to function on his own, what kind of life will he have, what happens to him if we weren't around to take care of him. What happens to him in his adult life, after we are gone, if he isn't able to care for himself. We had spoken to family about godparents before, but that was before his autism diagnosis. I'm sure they would still care for him as a child, but what about into adulthood. What became a commitment for a few years may have just become a life long commitment. I know I am jumping the gun, but I can't help it, I guess it's just the eeyore in me, I'm the eternal pessimist. These thoughts are just crushing, I know I don't want him to end up in a home some where, I want him to be with people that love him as much as we do. Does anybody have plans for their childs adult life, or life after mommy and daddy. What can be done to insure proper care for them. I'm not rich by any stretch of immagination, so It's not just a case of opening a trust fund, or even one of buying more insurance, the funds just aren't there for that right now. Thanks W. From: Anne [mailto:Lady_Anne76@...] Sent: Wednesday, March 02, 2005 3:34 PMAutism and Aspergers Treatment Subject: Re: planning for the future I don't think it's morbid at all. I think it's responsible parenting, and I congratulate you for doing it. Anne -- planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? > ATTACHMENT part 2 image/jpeg name=butt_09.jpg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 I dont think that your over analyzing anything. My sister who would care for my kids if something should happen is fully aware of Graysons needs. Everyone that needs to know about Grayson does. They have all watched her and pretty much knows what makes her tick. I'm pretty sure that Grayson will be capable of taking care of herself one day although if you told me that a year ago I would've been unsure. Most of these kids make great progress once they start therapy and will be able to function in the world. We have pretty much linked Asperger to my husband having it. His mom told me that he didnt talk until he was 4 and I know that he had a difficult time in school. She has also told me that he had tantrums as severe as Grayson. ( Poor lady! I wouldnt wish those on anyone.) When he got to college he was on the deans list for four years and graduated with a degree in Biology. He's a quirky guy. Loves all kinds of animals and science, very artistic to. > MetLife can to a recent Autism Society meeting. They have a special branch that handles planning for special needs kids - called MetDesk. > > Call MetLife and ask for the MetDesk. There are a lot of considerations with trusts and guardianship and care providers, etc. > > Becky > planning for the future > > Well, DH and I made a decision today to increase our life insurance policies > to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of > us. I think it would be important, in order for us to continue treatment with > DS & help him through things if we 1) didnt have to worry about bills, etc, > and 2) if we had the $ to hire help to come in. > > also, I told DH that if something happened to both of us, we would have to > provide the same for whomever of our family takes on the kids. > > Now we have to go make out a will....we dont have a joint one! > > Had anyone else come to this conclusion, or am I just being morbid & paranoid? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Here is a URL link that will get you to MetDesk. http://www.hkbass.com/index.cfm?source=section1.cfm & Angels >From: " Holland Family " <hollands@...> >Reply-Autism and Aspergers Treatment ><Autism and Aspergers Treatment > >Subject: Re: planning for the future >Date: Wed, 2 Mar 2005 21:16:24 -0500 > >MetLife can to a recent Autism Society meeting. They have a special branch >that handles planning for special needs kids - called MetDesk. > >Call MetLife and ask for the MetDesk. There are a lot of considerations >with trusts and guardianship and care providers, etc. > >Becky > planning for the future > > Well, DH and I made a decision today to increase our life >insurance policies > to 250K. Mostly b/c of the thought of how hard our lives >would be w/o both of > us. I think it would be important, in order for us to >continue treatment with > DS & help him through things if we 1) didnt have to worry >about bills, etc, > and 2) if we had the $ to hire help to come in. > > also, I told DH that if something happened to both of us, we >would have to > provide the same for whomever of our family takes on the >kids. > > Now we have to go make out a will....we dont have a joint >one! > > Had anyone else come to this conclusion, or am I just being >morbid & paranoid? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Here is a URL link that will get you to MetDesk. http://www.hkbass.com/index.cfm?source=section1.cfm & Angels >From: " Holland Family " <hollands@...> >Reply-Autism and Aspergers Treatment ><Autism and Aspergers Treatment > >Subject: Re: planning for the future >Date: Wed, 2 Mar 2005 21:16:24 -0500 > >MetLife can to a recent Autism Society meeting. They have a special branch >that handles planning for special needs kids - called MetDesk. > >Call MetLife and ask for the MetDesk. There are a lot of considerations >with trusts and guardianship and care providers, etc. > >Becky > planning for the future > > Well, DH and I made a decision today to increase our life >insurance policies > to 250K. Mostly b/c of the thought of how hard our lives >would be w/o both of > us. I think it would be important, in order for us to >continue treatment with > DS & help him through things if we 1) didnt have to worry >about bills, etc, > and 2) if we had the $ to hire help to come in. > > also, I told DH that if something happened to both of us, we >would have to > provide the same for whomever of our family takes on the >kids. > > Now we have to go make out a will....we dont have a joint >one! > > Had anyone else come to this conclusion, or am I just being >morbid & paranoid? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Thank you for the information, I'll check it out. W. From: A Bullock [mailto:discus_ab@...] Sent: Thursday, March 03, 2005 4:08 PMAutism and Aspergers Treatment Subject: Re: planning for the future Here is a URL link that will get you to MetDesk.http://www.hkbass.com/index.cfm?source=section1.cfm & Angels>From: "Holland Family" <hollands@...>>Reply-Autism and Aspergers Treatment ><Autism and Aspergers Treatment >>Subject: Re: planning for the future>Date: Wed, 2 Mar 2005 21:16:24 -0500>>MetLife can to a recent Autism Society meeting. They have a special branch >that handles planning for special needs kids - called MetDesk.>>Call MetLife and ask for the MetDesk. There are a lot of considerations >with trusts and guardianship and care providers, etc.>>Becky> planning for the future>> Well, DH and I made a decision today to increase our life >insurance policies> to 250K. Mostly b/c of the thought of how hard our lives >would be w/o both of> us. I think it would be important, in order for us to >continue treatment with> DS & help him through things if we 1) didnt have to worry >about bills, etc,> and 2) if we had the $ to hire help to come in.>> also, I told DH that if something happened to both of us, we >would have to> provide the same for whomever of our family takes on the >kids.>> Now we have to go make out a will....we dont have a joint >one!>> Had anyone else come to this conclusion, or am I just being >morbid & paranoid?>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Thank you for the information, I'll check it out. W. From: A Bullock [mailto:discus_ab@...] Sent: Thursday, March 03, 2005 4:08 PMAutism and Aspergers Treatment Subject: Re: planning for the future Here is a URL link that will get you to MetDesk.http://www.hkbass.com/index.cfm?source=section1.cfm & Angels>From: "Holland Family" <hollands@...>>Reply-Autism and Aspergers Treatment ><Autism and Aspergers Treatment >>Subject: Re: planning for the future>Date: Wed, 2 Mar 2005 21:16:24 -0500>>MetLife can to a recent Autism Society meeting. They have a special branch >that handles planning for special needs kids - called MetDesk.>>Call MetLife and ask for the MetDesk. There are a lot of considerations >with trusts and guardianship and care providers, etc.>>Becky> planning for the future>> Well, DH and I made a decision today to increase our life >insurance policies> to 250K. Mostly b/c of the thought of how hard our lives >would be w/o both of> us. I think it would be important, in order for us to >continue treatment with> DS & help him through things if we 1) didnt have to worry >about bills, etc,> and 2) if we had the $ to hire help to come in.>> also, I told DH that if something happened to both of us, we >would have to> provide the same for whomever of our family takes on the >kids.>> Now we have to go make out a will....we dont have a joint >one!>> Had anyone else come to this conclusion, or am I just being >morbid & paranoid?>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Personally, I have not thought about Cameron's adulthood. I have thought about his future if something happens to me and hubby, and Cameron will go to my sister-in-law, because she is a special ed teacher and would know how to take care of Cameron's needs. So I am lucky in that regard. Anne -- planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Personally, I have not thought about Cameron's adulthood. I have thought about his future if something happens to me and hubby, and Cameron will go to my sister-in-law, because she is a special ed teacher and would know how to take care of Cameron's needs. So I am lucky in that regard. Anne -- planning for the future Well, DH and I made a decision today to increase our life insurance policies to 250K. Mostly b/c of the thought of how hard our lives would be w/o both of us. I think it would be important, in order for us to continue treatment with DS & help him through things if we 1) didnt have to worry about bills, etc, and 2) if we had the $ to hire help to come in.also, I told DH that if something happened to both of us, we would have to provide the same for whomever of our family takes on the kids.Now we have to go make out a will....we dont have a joint one!Had anyone else come to this conclusion, or am I just being morbid & paranoid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2011 Report Share Posted November 26, 2011 Just today we completed a person centered planning session. My son will be 21 in January so we are determining what type of job experiences he needs, who he wants to live with and how to use a planner to manage his time & appointments. We have short term goals of 3-6 months that include his hopes & dreams as well as his and our families fears about the future. It was very helpful that we had a coordinator of the plan who had worked with Eli on a self advocacy training. Included in the planning were my other sons, my husband and the director of his chosen MD DDA funded service provider for supported employment. Ann Dawedeit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2011 Report Share Posted November 26, 2011 Hi, What state are you in? That sounds great! NY In a message dated 11/26/2011 11:39:57 A.M. Eastern Standard Time, Madgtc@... writes: Just today we completed a person centered planning session. My son will be 21 in January so we are determining what type of job experiences he needs, who he wants to live with and how to use a planner to manage his time & appointments. We have short term goals of 3-6 months that include his hopes & dreams as well as his and our families fears about the future. It was very helpful that we had a coordinator of the plan who had worked with Eli on a self advocacy training. Included in the planning were my other sons, my husband and the director of his chosen MD DDA funded service provider for supported employment. Ann Dawedeit [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2011 Report Share Posted November 27, 2011 Hi Ann/, I would highly recommend Person Centered Planning for every single one of our kiddos! And not just because I'm a professional Person Centered Planner This process has helped us to plan for my son, Jimmy's, future. He will be 21 in May - we started PCP when he turned 15. It has helped us to focus on obtaining meaningful work and living skill experiences that will enable him to lead an individualized, self-determined life as an adult. The process helps to keep everyone on the same page in all areas of his life plan. - I am in New York state, too. We have a funding stream here in NYS called " Consolidated Supports and Services " that supports Person Centered Planning and setting up individualized supports. Where in New York are you? I'd be happy to provide more information.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2011 Report Share Posted November 28, 2011 I would love this info, also. Karrie is 15 1/2 now and her school district either doesn't have a clue or just doesn't want to do anything with transition planning....they just told me she is not considered " competitively employable " ...so I started a human service cooperative. We are non-profit, provide trainings for parents and teachers. We are now doing Customized Employment. Anyone heard of that? Sue mom to Karrie 15 w/ds and autism On Sun, Nov 27, 2011 at 8:06 PM, linman42@... wrote: > Hi , > That sounds amazing! I am very interested and I live in Brooklyn. > I think AHRC has something similar to that but they said the family > needs to be very involved. This June I am retiring from teaching and > thought I would be more available to get an individualized program for > so I could be more involved. > But, I would love some info now and any contacts you might have for > anyone in the city. > Thanks! > > In a message dated 11/27/2011 11:20:09 A.M. Eastern Standard Time, > K@... writes: > > Hi Ann/, > > I would highly recommend Person Centered Planning for every single > one of our kiddos! And not just because I'm a professional Person > Centered Planner This process has helped us to plan for my son, > Jimmy's, future. He will be 21 in May - we started PCP when he turned > 15. It has helped us to focus on obtaining meaningful work and living > skill experiences that will enable him to lead an individualized, > self-determined life as an adult. The process helps to keep everyone > on the same page in all areas of his life plan. > - I am in New York state, too. We have a funding stream here in > NYS called " Consolidated Supports and Services " that supports Person > Centered Planning and setting up individualized supports. Where in > New York are you? I'd be happy to provide more information.... > > > > [Non-text portions of this message have been removed] > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2011 Report Share Posted November 28, 2011 Hi, any tips for someone who lives in Los Angeles, CA? Thanks! Kim L Doll, PMP, CSM - Customer Care - (310)964-4358 w - (310)503-6822 c - IM: kdoll2@... [cid:image001.jpg@...] From: [mailto: ] On Behalf Of linman42@... Sent: Sunday, November 27, 2011 6:07 PM K@...; Subject: Re: Re: Planning for the future Hi , That sounds amazing! I am very interested and I live in Brooklyn. I think AHRC has something similar to that but they said the family needs to be very involved. This June I am retiring from teaching and thought I would be more available to get an individualized program for so I could be more involved. But, I would love some info now and any contacts you might have for anyone in the city. Thanks! In a message dated 11/27/2011 11:20:09 A.M. Eastern Standard Time, K@...<mailto:K%40rochester.rr.com> writes: Hi Ann/, I would highly recommend Person Centered Planning for every single one of our kiddos! And not just because I'm a professional Person Centered Planner This process has helped us to plan for my son, Jimmy's, future. He will be 21 in May - we started PCP when he turned 15. It has helped us to focus on obtaining meaningful work and living skill experiences that will enable him to lead an individualized, self-determined life as an adult. The process helps to keep everyone on the same page in all areas of his life plan. - I am in New York state, too. We have a funding stream here in NYS called " Consolidated Supports and Services " that supports Person Centered Planning and setting up individualized supports. Where in New York are you? I'd be happy to provide more information.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2011 Report Share Posted November 28, 2011 A google search of " Person Centered Planning Los Angeles CA " yielded a 2001 document with the following information: The 1992 amendments to the Lanterman Developmental Disabilities Services Act Lanterman Act) require a person-centered approach to Individual Program Plans (IPP) for individuals with developmental disabilities (consumers). Person-Centered Planning (Building Partnerships and Supporting Choices) consists of excerpts taken from the IPP Resource Manual to facilitate consumers and his or her family regarding person-centered planning. More information about person-centered planning can be found in the IPP Resource Manual and More Than A Meeting, A Pocket Guide. If you would like a copy, call or write: Department of Developmental Services Services & Supports Section 1600 Ninth Street, Room 340 Sacramento, CA 95814 (916) 654-1956 Maybe you can try calling that number and asking about Person Centered Planning resources in your area? Sorry, other than that, I don't know anything about CA. I have enough trouble keeping up with New York state!! (yes, things do change that fast!) Good luck - Re: Re: Planning for the future Hi , That sounds amazing! I am very interested and I live in Brooklyn. I think AHRC has something similar to that but they said the family needs to be very involved. This June I am retiring from teaching and thought I would be more available to get an individualized program for so I could be more involved. But, I would love some info now and any contacts you might have for anyone in the city. Thanks! In a message dated 11/27/2011 11:20:09 A.M. Eastern Standard Time, K@... writes: Hi Ann/, I would highly recommend Person Centered Planning for every single one of our kiddos! And not just because I'm a professional Person Centered Planner This process has helped us to plan for my son, Jimmy's, future. He will be 21 in May - we started PCP when he turned 15. It has helped us to focus on obtaining meaningful work and living skill experiences that will enable him to lead an individualized, self-determined life as an adult. The process helps to keep everyone on the same page in all areas of his life plan. - I am in New York state, too. We have a funding stream here in NYS called " Consolidated Supports and Services " that supports Person Centered Planning and setting up individualized supports. Where in New York are you? I'd be happy to provide more information.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2011 Report Share Posted November 29, 2011 Person Centered Planning is clearly the direction to go. All our children and adults with down syndrome are individuals. The variation between individuals, environments, families, abilities, and needs is immense. This is partly why it is very difficult to have a standard " transition " program. That said, one must be very careful not to project our " life expectations " onto them. Our lives, whether easy or hard, are based upon survival and success issues and involve lots of things from social and religious environments to jobs, expectation of marriage and families, ownership of automobiles and the freedom of movement that they provide, etc. It is easy to project that the life of our loved one with down syndrome should fit into this pattern. At transition time, our kids are still developing their personalities and only beginning to express themselves. After all, they have had " helpers " all their lives, which they may or may not be coming to resent. Almost all parents I know have had to change their " dream for the future of their child " dramatically in the post high school years. I know that we and others really changed our aiming point over time based upon our child (now young adult) firming up who they were and what made them happy in life. If the future ever involves letting your loved one out of your control toward some life on their own, one needs to meld into the mix their feelings and desires and give them space to learn what they want for the future. Thus, I see Person Centered Planning as a short term (where do we go from here) plan with much less definitive long term goals. It needs to be fairly frequently reviewed to see if it needs revision. My child was good in vocational situations in her high school years. She had an after-school volunteer job working in a care program for children int he 5 to 8 year old range. The woman running the program was a wonderful mentor to Jan and kept her involved on the adult side and didn't let her become one of the kids. She typed mailing lists into the computer for Special Olympics and for a small art studio in the neighborhood. She had a job at Macs, first in the kitchen and later moved to custodial work. As she moved through transition, she started jobs, like bagging in a grocery store, with enthusiasm. She liked learning how to pack by watching the store's videos. But over time it became very isolating and boring. Almost no one talked to her and like others I'd observed, her work performance went down and down. A succession of other very low level jobs played out similarly. She didn't react well to the demanding management style, but needed a mentor who wanted her succeed, not just have someone doing the job. I know one woman with DS whose father had seen that she learned secretarial skills and who got her a job in an office and her own apartment when she left school. She could do the job very well, but she was socially isolated. The young women around her were having dates, getting married, holding baby showers, which was far from her life. She finally was " rescued " by a friend who saw the problem and works as a secretary at the local ARC. There she can use her skills, but she can also see and socialize with people whose lives are more like hers. On the other hand, a significant number of adults with down syndrome do have jobs and do them very, very well. A carpenter who has helped me with a remodel has a brother who is in his late 50's and has worked for Home Depot for years. He lives in a group home, but gets himself to his job and spends much of his earnings on presents for the family. There are people packing at grocery stores who are happy and proud of their jobs. Still among my closest friends who have adults with down syndrome, many are working as volunteers. Jobs there can be more tailored to the individual and the individual's capabilities and the management can be closer to mentoring than to having a cold boss. It is possible to be living on social security and be financially independent without the complication that comes from figuring out how one's pay-check affects your social security income and taxes. There isn't a " one program fits all " unless it is a program tailored to the individual. When and if the person with down syndrome moves out of their family home is a consideration. Different families take different approaches. That is a BIG step and a difficult one. There are programs such as Chapel Haven and Taft Community College and many others which may help some, but they aren't generally available. I am trying to get some " transition housing " set up in California which will give individuals a chance to have an apartment of their own with supervision while they learn about living away from home. This would be a stepping stone to a more permanent placement within a few years. That permanent placement would really evolve from the experience in the transition housing. Housing Choices Coalition (housingchoices.org) is a family initiated agency now supported by the state. They operate in three counties in CA, centered in San . They have partnered with developers on low income housing to get some units set aside for the developmentally disabled. Jan lives in one of those units. We have an opportunity coming up that I hope we can capitalize on. There will be ten studios on a common hall with one-bedroom apartment which might serve either as common space of living for a live-in-counselor. I need to find the agency which will provide the training and support for the individuals making transition from home to on their own. I would hope that we can get a model which can be replicated elsewhere, but first we have to get the first one going. Person Centered Planning is right, but one needs be able to look without imposing the dreams or parents or what is normal living onto our young adults whose dreams we don't want to spoil, but who may be reluctant to express them. Rick p.s. Yes, I'm on the board of directors of this little non-profit. There are more directors than staff. Quote Link to comment Share on other sites More sharing options...
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