Am I being unfair? Please read my story below.
I have a sister who is nearly 50 years old and has downs syndrome. She is not severely handicapped but she has limitations. Her mentality is about a 5 year olds. She could never live alone. She lives in a state run group home with 7 others who have varied levels of mentality. Here is my problem: The people who work at the group home want to take the residents on a cruise this year. They are doing fund raiser to support this trip. I am against the trip. I think there are many other things this group of people would enjoy that would be fun, exciting and less costly like trips to the beach (we are 4 hours from the ocean), camps, amusement parks etc. My concern is for the group and others on the cruise.
My question to you is:
1-Am I being unfair by not supporting this trip? My main concern is that fellow cruisers would not be tolerant of this group. Some of them are loud, one drools, some of their behavior is unpredictable etc. I don't want them to be shunned.
2-Would this bother you if you were on the cruise with them?
Hi Josie, I have a mentally handicapped lady, 66 years old living with me. She lives with me through a state run program called Shared Family Living. I am going on the Glory B cruise and she is going with me. 2 years ago I was on Carnival Spirit and there was a group of mentally handicapped people aboard. They seemed to be having a wonderful time. I noticed that most people were great with them. I work with mr/dd people and find that yes there are some rude people who make uncalled for remarks. On the whole though I think people are more accepting of handicapped people. When I decided to take Patty with me I asked her guardian what he thought. He was overwhelmed that I would even consider it and is supporting it. Would it bother me, no, not in the least. I am sure there are a few that will not be pleased but the handicapped have rights too. I have to say I hope they get to go and have the time of their lives.
“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.“
Josie, I have been on 2 cruises with a group of mentally handicapped persons. I watched them in the alternate dinning room and other places on the ship. I have found them to be polite and properly chapparoned. I think it is a great idea. I did not see any other passengers make fun of them at all. As a matter of fact, I wish all the other passengers would be as nice and courtious as our mentally handicapped friends were.
Well Josie maybe I'm looking at this from a biased point of via because I have guardianship of my aunt in a group home that is very severely physically and mentally handicapped. Would I personally have issue with the situation ~ no, but I can't even begin to imagine that the state running the group home is willing to take that liability! I know as guardian, I would never sign over the permission for such a trip! There are too many unknowns traveling in a cruise environment that a group home as never prepared it's residents for. I totally agree with trying to assimilate group residents into the every day world.... but given the sudden foreign environment, food, rooms, movement of the ship, etc..... They could have a real mess on their hands and if the residents of this group home have family guardians as opposed to state appointed guardians.... I would think they would step back and take a look at all the issues.
As for the other passengers on the ship, I have a few thoughts on that subject. Some may be uncomfortable with the situation, but then again the other school of thought is that these people are entitled to do anything anyone else is. I just think this might cause a spectacle and there are more 'appropriate' vacations out there. If one of the residents has a real problem with the cruise, it's not exactly simple to get them off ship.
I think I'm with you on this one and there is NO WAY that I would agree to that. And God forbid something happens... no matter how minor, the lawyers will be standing by!
IMO...I would not have a problem with them being on my cruise or should I say I would not have a problem with them being on THEIR cruise. I think you and anyone that cares enough to take these specially loved people on an outing such as a cruise, are angels in disguise. That's all.
I have seen "perfectly normal" people do most unseemly things in public. They don't seem to worry about how they look. Though I understand your concern with your sister.
But she will be chaperoned.
For the most part, people on cruises ~tend~ to be very polite and nice and have some tolerance, education and decency about them. They ought to be decent enough to share common space with people of all backgrounds.
Anyone churlish enough to be displeased with sharing space with a handicapped person is unreasonable and must think their poo doesn't smell.
My concern would be not for the fellow passengers, but for the folks themselves. How well would they handle the stresses of travel, change of environment , lack of familiarity of surroundings etc. If those types of factors are not an obstacle I would support the trip and would gladly and willingly share a cruise with their group.
As far as their being loud and drooling, sounds like a typical cruise crowd to me.
understand your concern...I'll make the basic assumption that the group home will provide enough staffing for the cruise (for safety and logistics). cruise lines are doing a better job as part of their marketing effort for ADA compliance to accomodate special need groups
with that said, I think it's a super idea on their part to provide an experience such as a cruise and that as more and more people with intellectual disabilities do main stream activities you will find that the majority of fellow cruisers will be open and accepting(about 1 in 5 families have a member or know of someone with an intellectual disability)
for those few that would make an issue of it (and they would probably make an issue of anything) the heck with them
you might want to consider going with your sister on this cruise it would be a great family activity.
Don't forget because the ships sail under foreign registry they are not required by law to adhere to US ADA requirements. The terminals etc are required because they are on US soil.... so some things that are taken for granted here may be lacking on ship.
I think it is a great idea and would support it completely!
There are many people on a cruise and some are poorly behaved and have no issues( not handicapped) so why worry .
I would not worry about them falling overboard, they are no more likely to do that then a child and the ship is filled with kids!
People with diabitlies can do most of the same things you and I can, families are often reluctant to try, so what if they drool or make noises.
The ships crews tend to be VERY supportive from what I have heard so as long as there are enough chaparons let her go!
Years ago I worked with kids with dis. , I remember one family that dropped off their daughter on a Sat . morning for respite care, they were going on an outing and didn't think it would work for her.
Well guess what, we took the kids to the lake that day, and guess who we ran into, that's right, the family of the girl. There was two of us aides and 5 kids and we had no problems, but this family was two parents and only one other child, they didn't think they could take their downs syndrome kid to the lake because of many of the issues you mentioned, but , really with the proper chaperons there was NO problem, and quite frankly we didn't give a damm what other thought of " our " kids, they had a right to a day by the lake. The family was surprised , but pleased, and from then on tried doing more with " Laura".
Don't let fear and embarrassment be allowed to cloud your judgement, your sister ,may be fine, and the aides that live and care for her would not include her on this trip if they thought she was " uncontrollable". As long as there is a good client / worker ratio it will be fine!
i think you should let your sister go every person has some kind of handicapped
and your sister has rites as everyone has let her have some fun go with here and
spend some time with here you could have a great trip with her and might get
a great memory for both of you
PS I just reread your post and you mentioned the group home taking the residents to an amusement park as an option. HOW, would that be better then a cruise, amusement parks are crowded, noisey, and confusing, I would much prefer taking a group to anywhere BUT an amusement park!
When I was a teenager (we won't go into my current age bracket), I volunteered to work with the mentally disabled at girl scout camps. That was the best time of my life. Most of the girls and women had down syndrome.
I think a cruise would be fun for her and the rest of her group. Of course, she would probably need a bit of extra monitoring but doesn't she already around the home? As for them bothering other guests . . . .the only thing that bothers me is when people get bothered by the mentally disabled!
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I can understand Josie's reasoning about or an amusement park or something else... because it is not so much the noisy environment but it's the constant of returning to the routine of 'home' for many group home residents. Dependent on the disiblity the slightest disruption of a routine can have severe consequences. I would hope that a group home would have enough sense to have enough staff... but unless it's a 1-1 ratio... there could be problems. Someone mentioned taking someone that lives with them that is mentally disabled .... that's a little different situation because that is a one on one situation .... and that person is used to every day to day activity and event that affects the person. In a group home, there is a constant rotation and turnover of staff, and even though they 'know' their clients ... they don't have that one on one because most group homes are staffed on a 3-1 ratio.
As a guardian of someone in a group home, I can understand Josie's concerns.... and i know all about the client's rights.... but sometimes guardians and agencies have to step back and say 'is this best'. I can't imagine that a state run group home is going to allow this to fly. <IMHO>
booboo4031 offers excellent insight into the problem... a stable routine is required to keep many mentally challenged residents of group homes in line. Tust me, I have such a brother-in-law and when his routine is disrupted in ANY manner, it's a problem. The group home supervisor where he used to live took the men to the beach every summer for a few days and that worked well only because she had one chaperone for each resident. Without one-on-one support, he would feel insecure and be totally out of control (and he's 70-something).
JMHO, but this cruise plan could be a disaster... it sounds like it's something the group leaders want to do, not their residents. If it requires flights, that could pose problems at the airport when fear of flying becomes evident for the first time. Once on a ship, I don't even want to think about the many forms of paranoia that could become apparent.
It has nothing to do with what *other* passengers might think... it's all about the group. If some of them exhibit "unpredictable" behavior in their usual setting, just imagine how they will react in such foreign-seeming surroundings. I think it's a very admirable plan, but ultimately a terrible idea.
I couldn't agree with you more. Many people have very good intentions, but I think until you've 'lived' with dealing with the group home issues it's hard to explain how there are so many issues that come into play. It's not a matter of denying anyone the enjoyment of life, but rather making appropriate choices for the clients.
I know if my aunt, were in that group home... my answer to this trip would be no... and it would not be to deprive her of anything... but it would be more because I know what the fallout of a trip like this can cause.
Cruise diva.... I agree with you when you said that this sounds like something the staff wants to do.....
If they are capable of handling the change of enviroment and are not physically acting out towards other people in what could be considered violent ro doing things like throwing things like food etc then why not? Many times they enjoy it just as much if not more than your everyday folks and it can be very good for them. Yes some people can be cruel so you have to hope they will understand that as well and you may get a few that are down right mean and nasty and complain that 'these people' should not be seen or allowed to be with 'them' but ignore those few pitiful people as they are not as happy or as intelligent than these mentially handicapped folks. Some things bother me when I observe them such as drooling, vomit, or mucus so I simply do not look at it. It is not their fault if they are afflicted this way. (That is strange too as I can see blood, brains, and other types of gore with no problem but those other things get to me for some reason just like messy baby diapers) I hope that they all get thier wishes and have a wonderful time. Please make sure that they actually want this for themselves and not the caregivers though. Remember they often have the emotions of a child and enjoy what a child does and that isn't a production show for fine dining or laying by the pool. Many want action and fun and activity just like kids do and the cruiseline does not have a program for them like they do actual children.
Many Downs persons( Joisies relative is Downs) are high functioning, not high enough to live on their own, but not " paranoid, " "or violent" , I just maintain that the staff most likely are the best judges of the clients ability to handle a situation since they live with and care for them. Families are not always the best judges, especially if the person has not lived at home for many years( if at all) .
I do agree that the clients would need proper staff support, perhaps family members could be persuaded to accompany them, the staff would still be there, but the family members could assist with shore exes.
Just consider all the facts and don't just assume that a person with Downs can't do something, they most likely can, with support and preparations!
BTW The atheletes that compete in the Special Olympics are all " special needs" and they sometimes have to fly to the games, not all disabled are going to freak out on a plane. Lets not make up worst case scenarios, things can happen, but hey, that is life, and we can't keep people in neat little boxes because it seems the easiest and safest.
Years ago parents with Downs babies were told automatically to give them up at birth, that they would always need to be in an institution, thank goodness we are not in those dark ages anymore.
I know I seem to be pushing for Josie to allow her aunt to go, I guess I am in a way, but I do realize that the decision has to be made based on her aunts true abilities and not what some people assume are the problems. Her aunt may truly not be a good canidate for the trip based on her own personal abilities, fair enough, I just hope the decision is based on her as a PERSON and not her label.
What interests me is some people just assume that it would be a bad idea to let the mentally disabled travel on a trip like this just because they have a lower mental age( what don't we take kids on cruises?) or just because they might do something wierd( I mean come on who said they might fall overboard, isn't that a bit melodramatic) ?
First of all Josie's sister lives in an group home environment which indicates that she does not live on her own. I have no idea if you have ever been involved with staffs in a group home, but I have for over 42 years and the staff is not the one that I would allow to make a decision to take such a trip or not. Most direct care staff in a group home are non-medically skilled caregivers and in most cases are there for a very short period of time. The national average turnover rate for group home caregivers is 6 months! I believe Josie is more qualified than anyone to make the decision and voice her concerns over this trip.
Ultimately, it is the choice of the guardian to say yes or no to this cruise. No whether Josie has guardianship or somone else does she hasn't said. But if the guardian says 'no'... that's the final answer. It's funny because I mentioned this post to my mom who has co-guardianship of my aunt of is in a group home .... and her response was "that would be the day...."
If Josie is not comfortable with ANY aspect of this trip, I think she should continue to voice her concerns not only to the group home administrator but also to the state agency that oversees the group homes for the state because I cannot believe that the agency has been clued in to what is going on.
If there are any girls or women of child bearing age I would watch them very closely! Watched an expose recently about a woman who took her mentally challenged daughter on a cruise, and when they arrived home she discovered her daughter was pregnant. Come to find out a Filipino employee (married with children) took advantage of this girl. He claimed he was going to support the baby. RIGHT!!
You know what, my last word on this is, fine , Josie can and will do what she thinks is best, BUT when you other posters need to go back to the orginal post. ( Yes, reread it)
Josie did not say that her sister was not able to handle the trip, she did not say she was worried about the staff ratio, NO , SHE DIDN"T EVEN MENTION safety concerns, now did she?That is a convenient way to cover up some prejudices and lack of knowledge by some ( no not all) posters and not appear in a poor light. ( and no I don't mean Joise either, I do think she posted a legitimite question and got some mighty interesting answers.)
Her two concerns were, what would other cruisers think and " would it bother you" if these people were on a cruise with you.
Give me a break, I think some of you have answered the questions quite well, the answer is , yes Joise we don't think people like your sister should go anywhere, because who knows what could happen, (they might get pregnant) ! or they might " fall over board" and they could be unpredictiable.
Gosh, Have you guys all worked with mentally handicapped before, or are some of you just spouting your mostly patronizing theories.? ( based on visiting a distant friend or relative once ) SOME of you are really off track, some of you are concerned and caring but not really knowable.
I have( worked with mentally challenged and disabled youth and children up to 18) , and although some of the things stated may happen, some times, I still trust the staff judgement over some relative or guardian who:
a) did not raise the person( so not a parent or caregiver)
b) has not lived with the person in many years. ( does a visit on Sundays count?)
As for staffing problems, burn out is common, but , obviously more of a problem in the States because I have not seen that sort of turnover at the group homes in our area( a poster said every six months) , most staff in these places like what they do, and do have qualifications, here you would have a " mental health care aide " certificate, or a " recreational aide" cert. or a licensed nurses aide. The pay isn't great, so no one does it for the money, 98% do it because they enjoy the folks, and want to make their lives full and enjoyable.
Josie, do what you will, but I really hope you base reasons on true concern for your sisters safety and happiness, not on some silly concerns about other cruisers, there are silly people everywhere, so don't let them get in the way of your sister having a life.
PS Have you asked your sister about the trip and what she thinks, even a five yr old has opinions and thoughts you know. She is not a vegtable, and although it is up to you and others to make the important decisions for her( just like we all do for our children) it is important to respect what thoughts and feelings she is capable of exspressing,( just like we do withour kids) .
Good Luck Josie on a tough decision.
Carol I watched a show once that said a women was raped on a cruiseship. I still walk around alone on them at night and feel perfectly safe. Just becasue one bad thing did happen does not mean it will always happen.
Spout as you may about the wonders of group of staff, they are precisely staff and ultimately it is a job and as in any job staff comes and go. Any insinuating that staff knows better than family is the usual rainbow tune of the social services world that families and guardians learn to tune out after awhile. As I've said in previous post, if such a trip is allowed to go forth, they had better have their release forms looked over by a lawyer.... because heaven forbid something happens, the agency and/or the state has set themselves up for a very bad situation. I've heard the rights preaching for years... and at the end of the day common sense and safety must still prevail....
If Josie is uncomfortable for any reason with this trip, she should continue to voice her disagreement against it because it isn't any social worker (contrary to their job desicription) that is going to step in and advocate for her.
Thank all of you for your responses. I have read them all several times. It is nice to have a message board like this to get all different kinds of feedback.
I have 2 sisters and one brother. One of my sisters (Janet) is the one living in the group home. I had never thought about who was Janet's legal guardian until this situation came up. My Mother passed away 2 years ago and until that time I never had to think about guardianship. My Mother took care of that sort of thing. But now my brother, sister and I are her only support family. I called Janet's case manager yesterday to find out if we were her legal guardians. I found out that we are her LAR - Legally Authorized Representatives. She has no guardian because she signs for herself (scribbles) and has not been determined mentally incompetent. I didn't know this because there has been no reason for me to know it until now. Maybe that was negligence on my part.
The responses to my post have given me a lot to think about. I'm going to share them with my siblings. My main concern is the welfare of my sister and the others in the group home. And, also is the cruise what they truly want or is it what the counselors want. I appreciate all of the concern, advise and guidance from each of you.
I hope things work out for you. I don't know what state you're in but guardianship laws requirements vary from state to state ....if you need any assistance give a holler... i've been at this for years. My grandmother had guardianship of my aunt (her daughter) and my mom & I have co-guardianship of her now.... and 'best interest' requires constant watching.
Josie, I also have a sister who after 51 birthdays, is still 2 years old according to her verbal score. She lives in similar circumstances, a state supported group home. My older sister is her designated guardian. I talked to her guardian about your question.
Since my sister deals directly with staff on a semi-regular basis, I'm somewhat out of that loop. But I was surprised to find out that Patty has traveled with the group, though not on a cruise. Neither of us thinks a cruise would be appropriate for Patty, because she is so unstable on inclines and the sea environment might be too much for her sense of balance. We think the staff would agree.
I can tell you that we trust her staff, so much that we invited her staff and housemates to enjoy our family reunion last fall. You know your sister's circumstances better than anyone here. But if you trust her staff, and if she wants to go, I would let her go.
I have seen such groups on cruises. They're as enamored with ships as any other happy passengers. And I have never seen any overt shunning or other unkindness on the part of other passengers, though I don't doubt it happens. You encounter such people wherever you go.
It really is two questions. Do you trust the staff enough to care for her on shore? If so, they'll likely be trustworhty on a cruise. The second question would be, if your sister wants to go. Good luck with your decision.
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Sensation 2/03 I disembarked, but never really left the ship.
Enchantment 9/03 Just had to go back.
Inspiration 3/04 Just have to go back again, and again, and again...
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Summit 03/06 It's Margaret's fault!
boohoo. Americans are sue happy. I can't believe that's all you guys think about!!!! I am serious, I can't beleive that's how you guys think " get those lawyers ready" I just want you to know Americans are considered " sue" happy and your last post proves that one American ( you) thinks that way any! It is kind of funny.
Your mother never had your sisiter declared mentally incompetent?
Boohoo, , so if Josie " is uncomfortable for any reason" she should fight the trip. When you say ANY reason you mean even if the reason has NOTHING to do with safety?
You can call me an idealist , but at least I realize safety is the important factor, and not some of the shallow concerns that SOME have brought up.
Sounds like you dislike handicapped people and don't think they should go in public.
well at least we know where you stand.
Thank goodness for the " rainbow tune of social services" because those who live in that world have spent the last 50 yrs dragging the disabled out of the crap holes and institutions and helping them to live way fuller and better lives.
Do a little research on what used to happen to mentally disabled , downs, and developmentally delayed, their lives were not very nice.
It's not a matter of being sue happy ... we never had to have her declared incompetent.... she's deaf/blind/doesn't walk or talk and has the mentality of an 18 month old! Oh but she's 55 years old. There is more abuse physical and emotional abuse that goes on in group homes than you can shake a stick at.... and that is why guardians have to be ever vigilant. You can check the statistics and that's why in 26 states in this country there have been thousands of investigations and founded abuses by direct care workers!!! So if you consider that sue happy .... consider that what you like. The group home is well aware that I go into the home... every day and they never know what time it's going to be...... There are very good homes out there and there are homes that I wouln't put a dog in. Unless you've ever been involved long term in this social services fiasco.... be very careful which stones you cast. I've had to fight for services to the governor's office because things in a group home were out of line.... and if that's what it takes so be it ..... So be careful of the assumptions you make ... if the social services red tape doesn't work .... a well placed legal letter often moves the wheel.
It is wrong to say that the staff knows less about their consumers in the group home situation than the family does. In many of those cases the client has never lived with their families because they were put in institutions from birth. Staff is all many have had. Those caring, loving people that spend their lives caring for the handicapped. NH was the first state to go to a NO institution, community based program. In the early days the handicapped were released into group homes and private homes. Many families took in the mentally handicapped. These people quickly became members of these families. Day programs found work and social things for them. We are relative newcomers to this system only having had Patty for 5 years. In that amount of time she has taught us a lot. We love her and have her best interests at heart. Would we allow her to go on a cruise? Yes as she is booked to go with me. I do know that many of the former patients of the "State School" are contributing members of their communities. Many have jobs, go to churches, go to school and do volunteer work. Many proudly go to the polls and vote for the candidate of their choice. Some even own their own homes. Some have married and have children. She visits her family from time to time. She goes to them for Christmas. We make sure she visits with them as regurlarly as possible. Do they know her as well as we do? NO, She has never lived with any of them. In fact none of them are even her guardian. Her guardian is a wonderful man from the Office of Public Guardian. Permission for her to go on the cruise came from the guardian, not a family member. I too say thank goodness for the rainbow tunes of social services. The institution here was a prison for the patients. Imagine being locked up because you have a handicap. Ironically the former institution is now a prison. The difference is that now you have to commit a crime to get in. Josie will have to make the decision for her sister. I do hope she will consult with the staff that knows her and spends their days with her. Is she physically fit to make this trip. Will there be enough staff to make sure all have the attention they need? I would consult with her Dr also, his opinion is valuable. Above all she is a human being with feelings like everyone else and I bet she loves to have fun too. Good luck with your decision, I know it is not an easy one.
Post Edited (03-11-05 12:47)
“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.“