Disability office says parents are not needed/welcomed at Acccomdation meeting?

[wackattack69]

 Okay so DD is ready to start at a new college in Kansas. This will be her 2nd year in community college, but 1st year in a Kansas community college.
We dropped off some forms at college today and took her Disability forms to the lady in the Disability office. She was very put off that I was even there. My daughter finally said "I don't drive".
We made an appt. for next week and the lady said "we don't need you here for that", to me?
DD is realizing she needs to advocate more for herself (and really did at her old college, before we moved), but she does want me in the meeting, in case she forgets something. (I'm a nurse).
Thoughts are welcomed.

[rebekahc]

Sounds typical of colleges and universities - they don't want nor need parental input, generally. Even my DS who started university at 16 had to handle things himself.

[wackattack69]

This is the letter they gave me...sorry for the length. DD has PA off charts since age 18 months, asthma since 2 years, vocal cord dysfunction, migraines, also allergic to PCN, all Sulfa, Latex and Shellfish.
An Open Letter to Parents of Students With Disabilities About to Enter College


Dear Parents,

I have been working in the area of students with disabilities at the college level for more than 30 years, but that is not why I am writing to you today. I am writing as a parent, and thus as someone who shares all your current anxieties. My daughter, who graduated from high school in early June, will be going away to college this Fall. She has Cerebral Palsy, uses a wheelchair, and has limited speech capabilities, so you can be assured that I have been very involved in the educational programming and planning she has received during her years in the public school system. I wanted to be involved, but I also needed to be involved since, by law, the school could not do anything for, to, or with my daughter regarding her disability without my permission. I sat through countless IEP meetings over the years, I was insistent on certain issues of academic support when I needed to be, and I agonized over everything from teacher selection to her successful social integration with classmates. And now, as I prepare to pack her up and take her off to college in the Fall, I recognize that this role has ended for me – and the word "anxious" doesn't even begin to describe my feelings.

If you are worried that your child with a disability will have a difficult time making a successful transition to college without your involvement... then you are probably right to be worried. Very few children with disabilities can succeed at the college level. On the other hand, students with disabilities survive and thrive on college campuses across the country. If you still think of your son or daughter as your "child," and they still are comfortable in accepting that role, it is time to take a careful look at where you have come from and what lies before you. As parents, it is time for us to step back and allow/encourage/gently nudge our SWD's (Students With Disabilities) to assume significant independent responsibility for their own lives, both academically and personally.

As you and your SWD prepare to visit campus for that initial meeting with a disability service provider at the college, you would do well to think about what can be accomplished at this initial meeting, what needs to be said – and who is going to say it!!! As I approach that same milestone with my daughter, I find myself a little panicky, realizing that there are things about her disability and how it impacts on her functioning that I know and that the disability services provider needs to know, and that I may not have many chances to say. There is no doubt that I can explain those things more fully than my daughter can explain them (or even understands them!). And it doesn't matter. Much as I hate it, I know that SHE has to be the one to convey all this crucial information (not me!), for a number of reasons.

First, colleges and universities provide services and support to SWD under very different laws than those that governed services in the K-12 system. As a parent, I have no rights under Section 504/ADA in speaking for my SWD who is in college. (If you aren't sure what "Section 504/ADA" means in this context, perhaps the disability service provider you meet with will have gathered some information that helps explain the differences between settings, both legally and practically. Two of my favorite websites for learning more are at: http://www.ed.gov/about/offices/list/ocr/transition.html and http://www.heath.gwu.edu/). The services and support available to SWD are sometimes very different than what was provided in high school, and the college is under no obligation to continue the services given in high school or to adhere to the recommendations of an outside diagnostician. The college will make its own determination of what services and support to offer, based on the documentation of disability and their interview with your SWD. There are no IEP's in college, there is no place to sign off with my parental approval. Indeed, the college doesn't legally have to care whether I am satisfied or not. My daughter is responsible for her own destiny now.

More importantly, while this may be your last chance to convey all that important information on to the college, it is your SWD's first chance to convey that information all by himself/herself. Don't spoil that opportunity, and don't interfere. Remember, while you and your SWD are learning more about the campus, the resources, and the people who will be there to help when needed, the disability service provider is learning more about your son/daughter, as well. You want their first impression to be one that is positive and reassuring. The service provider is anxious to find out whether your SWD is mature enough to handle the responsibilities and independence of college life. Here are some specific suggestions for helping your SWD to shine in this newly focused spotlight:
•DON'T be insulted if you are not invited to sit in on the initial meeting between your SWD and the disability services folks. Some institutions have found that it is helpful for them to speak directly (and alone!) to the student in order to get a feel for how knowledgeable and confident s/he is in sharing information about past services, what works and doesn't work, and what accommodations they hope to have at the college level. You will get a chance to ask your questions, but recognize that it may come later, rather than sooner.
•If you are invited to sit in on the meeting with the disability services folks, DO acknowledge your SWD as the authority on their disability-related needs by making it clear that you believe they have all the answers! Try focusing your visual attention on your son/daughter instead of trying to make eye contact with the interviewer. If you look to your SWD, so will the professional.
•DON'T begin any sentence with "S/He needs to have..." Instead, you can try, "In high school, s/he had..." or "The person who tested him/her suggested..." but it would actually be better if you said nothing at all! Try to talk as little as possible in the meeting. This is not your meeting. Remember, you are there as an observer, not as a participant.
•DO take some time prepping your son/daughter in advance on the issues that you think need to be discussed – the things that you would say if you had the chance. Make a list of the topics you would bring up, explain why you think each is important, and make sure your SWD has the list in hand when s/he goes into the interview. Rehearse with your son/daughter, if they will let you. If they are typical teens and aren't comfortable sitting through that kind of rehearsal, settle for making them sit and listen while you demonstrate how you would approach certain subjects. For example, "I think you should tell them about how the teachers arranged for extra time for you on tests when you were in high school. I'd probably say, 'In high school, I was allowed extra time for tests in English because it takes me a long time to put my thoughts in writing, but I never needed it in Math.'" Your SWD may not acknowledge the strategies you share, but you may be surprised to hear those words come out of his/her mouth at the interview!
•DON'T interrupt. If you disagree with something the disability service provider says, or if your SWD says something that you know is incorrect, or if you see your SWD agreeing with/to something when you know they have no idea what they are agreeing to – DON'T INTERRUPT! Let the interview play out. Give the disability service provider a chance to draw your SWD out further, give your SWD an opportunity to clarify matters, or simply wait to see if the confusion/disagreement remains. It is important to know just how independent and accurate students are in describing their needs. You will get your chance.
•DO prompt your son/daughter to speak up and share those important points as the interview progresses. Instead of explaining to the disability service provider why Johnny needs a calculator in math classes, turn to Johnny and say, "Why don't you explain to Ms. ____ why it is important for you to have a calculator for math and science classes. Is it because you have trouble lining up the columns, or because you have trouble remembering basic math facts or ?" Give an open-ended question that encourages your SWD to flesh out the response. At the same time, you are hinting to the interviewer that there is an issue here to be discussed (See? I told you that you would get your chance!)

Why not take notes as the interview progresses? When your son/daughter has exhausted the list of topics to discuss, and the disability service provider has shared all the information they thought was important, it is YOUR turn to talk. Go ahead and ask your questions. The most important thing to remember now is that you do not want to undermine your son/daughter's credibility. If you have more information to share on a given subject, try starting the sentence with, "As Susie told you, she has used..." and then add whatever you need to on top of information already given. If you think your SWD gave incorrect information, tread carefully. You might say, "I was surprised to hear Jane say _____. I would have said _____, because..." You'll get your point across without directly contradicting what your son/daughter said. Your goal is to assure both the SWD and the disability service provider that you are supportive of their budding understanding, and simply want to share another viewpoint.

An old adage maintains:

There are only two things a parent can give to a child...
One is roots. The other is wings.

It is time for our kids to solo. That is a scary thought for us, as parents, and it is sure to be scary for them, too. That's OK. This is what we have all been working towards for a long time. Remember, your son/daughter will call, email, or text if they need you. They know what you can do for them, but now it is time for them to go it alone. Take a deep breath, cross your fingers, wish them well – and walk away. All will be well!

Best of luck,

Jane Jarrow
Proud (and Terrified) Mom

[GoingNuts]

Hi Wackattack - I'm not surprised at all either.  When we attended orientation with DS, the extent of our involvement was asking who we needed to see for various forms to be handed off, and helping him make sure his medical forms, extra epipens, etc. were dropped off in the appropriate place (which was really easy since the Health Center had a table in Campus Center as part of the whole process).  They made it clear that it was his ballgame, KWIM?

It is really nerve wracking and terrifying to send an 18 year old male 300+ miles away from home with a food allergy, but I have to say DS rose to the occasion.  He hasn't always handled things the way I would have, but he has handled them his way, he's comfortable with it, and it has (knock wood, poo poo poo) so far worked out.  He graduates in May.

How did her previous school handle things?

[rebekahc]

It isn't a matter of who has a worse disability (and I feel like that's what you're trying to establish by listing out all your DD's conditions).  Colleges and universities expect that any* student who is there should be treated as an adult because they are an institution primarily for adults.  If your student is not able to handle her own business dealings with the school then, in their view, neither is she able to handle her academic dealings with them.  Laundry listing any and all disabilities (and conditions that aren't disabilities) for them doesn't change that basic fact.

*possibly with the rare exception of a very young student (ie early teens or younger)

[CMdeux]

Sounds typical of colleges and universities - they don't want nor need parental input, generally. Even my DS who started university at 16 had to handle things himself.

Yup.

DD was on her own with much of this even at fourteen, when she was applying to colleges.

I've gone with her to meetings a total of twice-- once when she'd had a reaction and was a mess, and once over an unrelated thing that left her (and would have left her, even at 21+) a complete wreck emotionally.

Both of those were considered "extraordinary" circumstances, and more leeway was given.  Ordinarily, I don't get involved.  (DD is 16, and has managed her allergy and disability management pretty well).

In all honesty-- I like that letter that they sent.   It's a good reminder, if a fairly pointed one, that it's time to transition to having your child manage his/her own disabling conditions.  Most of us feel QUITE panicky over that-- there is a LOT at stake if they make mistakes, for our kids.

I do get that.  DD cannot live in the dorms, for example-- because of the nature and severity of her particular food allergies.  So I do get it.  But it has to be done, this step.   

[starlight]

As someone who works for a university, while some of this comes from trying to avoid the sheer volume of angry helicopter parents, a LOT of this comes from FERPA and not wanting to overstep. It's a lengthy law with very large books written on it and while we do have to go through FERPA training, it has a lot of nuance people can't or won't remember. It doesn't matter how old your child is, if they're in enrolled university course, we are not allowed to talk about the students' records with their parents or anyone else unless the student provides a sign-off. Each time. We could lose federal funding and face lawsuits if we do. At my school we take privacy concerns a step further: parents can talk to us about them all they want, but we aren't allowed to give any student-specific information back. ANYTHING. We aren't even allowed to confirm your child is going to our school over the phone. If we do, woah. So fired.

[wackattack69]

It isn't a matter of who has a worse disability (and I feel like that's what you're trying to establish by listing out all your DD's conditions).

No, it was not my intention...AT ALL.
I don't have all of her "issues/allergies" listed at the bottom of every one of my posts, as many do.
That is the only reason that I listed them.
I am also not a new member, as my post would indicate. I have been here for about 7 years. I was gone for a while and when I came back, I could not log in, and had to create a new username.
I am well aware of FERPA and have had much experience with it.
My daughter was given 5 new meds in August of this year and had 3 ER visits because of that. She is still quite emotional and would just prefer to have me there with her, even though she is going to do all of the speaking herself...unless she looks to me for something she is forgetting, etc.
The "accommodation assistant" who we dealt with that day actually mentioned "peanut allergy" when we handed her the papers from the DR....this in a small room where 3 boys were working on something....and yes, all 3 of them looked up at us. KWIM?? I have a problem with that.
I know this is hard and I know this has to be done, but I just wanted some guidance. I thank those of you who have given me that. It is very much appreciated.
For those of you who have not.....you don't know me. Don't presume to. Please PM me, if you need something clarified.

[CMdeux]

When there is NEW information to be shared, new management to be adjusted to, then absolutely schools are a bit more understanding about parental involvement.  That's been our experience, at any rate.

Involvement of on-campus health resources is another route to dealing with the disability office.  They will definitely put more faith in "in-house" expertise, right or wrong.  Just be aware that info shared there is covered as FERPA and not HIPPA once it enters the university domain-- clinic/health center or not.


The other thing that I've noted is that some administrators are less "judgy" about parental involvement than others-- my DD's had some faculty/staffers who were VERY understanding about it, and a few notable people who were-- well, to be perfectly blunt, I thought they behaved outrageously under the circumstances.  Again, this is something that you pretty much have to coach your child to manage, though.  I try not to think too hard about what she might be skipping over, or ignoring in the name of not making waves.   


(I do remember you from way back, BTW!!     Long time, no see!)

[rebekahc]

It isn't a matter of who has a worse disability (and I feel like that's what you're trying to establish by listing out all your DD's conditions).

No, it was not my intention...AT ALL.
I don't have all of her "issues/allergies" listed at the bottom of every one of my posts, as many do.
That is the only reason that I listed them.
I am also not a new member, as my post would indicate. I have been here for about 7 years. I was gone for a while and when I came back, I could not log in, and had to create a new username.
I am well aware of FERPA and have had much experience with it.
My daughter was given 5 new meds in August of this year and had 3 ER visits because of that. She is still quite emotional and would just prefer to have me there with her, even though she is going to do all of the speaking herself...unless she looks to me for something she is forgetting, etc.
The "accommodation assistant" who we dealt with that day actually mentioned "peanut allergy" when we handed her the papers from the DR....this in a small room where 3 boys were working on something....and yes, all 3 of them looked up at us. KWIM?? I have a problem with that.
I know this is hard and I know this has to be done, but I just wanted some guidance. I thank those of you who have given me that. It is very much appreciated.
For those of you who have not.....you don't know me. Don't presume to. Please PM me, if you need something clarified.

I apologize if I misinterpreted what you were saying.

The reason for having allergies listed at the bottom of posts is one of convenience. When people are responding to questions it often helps to know which allergies and allergic conditions the OP is dealing with.

I do remember you and am aware you are not a new member.  You used to live near me.

I agree with CM, that NEW information/medications/treatments/ettc. should affect the level of parental involvement. The college may or may not see it that way, unfortunately. A lot will depend on who you are working with at any given time.

I believe everyone who has responded in this thread has posted honest and helpful information even if they're not agreeing with your point of view. Many of us have BTDT within the past few years, so I think our experiences are very relavent and valid.

Since you've made it clear the only input you want is from those who agree with you, I'll respectfully bow out of this conversation now.

[Macabre]

I talked at length with a friend who is a disability officer at a small private college in Virginia. She expected the families to contact them right away during the admissions process. She did have a few parents who were a bit helicoptery. But she e courage me to contact the disability services office NOW during the application process. Some families wait to late she said.

[CMdeux]

One thing that we did which I think has been (and continues to be) extremely useful in getting DD the accommodations that she in particular needs (as opposed to choosing from a menu of options that don't really fit her in particular, I mean)-- was to consider carefully what "standard" looks like at any particular institution-- and then decide what it needed to look like for DD in particular.  That is, are freshman MANDATED to live in group dorm settings on campus?  and then figure out if there is any reasonable way that such a thing can be made to work for or not.

In DD's case, for example, we didn't really need to fight this one, but we learned that there would be NO decoupling of housing and dining plans.  They insisted that THEY were going to "work with" her to "find safe choices."  Even if we were not comfortable that ANY food they prepped in shared spaces could be "safe" for her to eat.  For us, that violates a primary rule of management-- that DD always gets the decision-making power of what constitutes "safe enough" for her to eat.  SHE decides-- because the consequences are hers, too.  Not some dietician from university housing and dining.
  Now, DD also isn't most people, even most people with food allergies.  So for 95% or people with food allergies, working with the dining staff probably WILL work.  But this is why individual accommodations are-- um-- individual.

We went in with DD's 504 plan, which had been tweaked during her junior year so that it was prepared to make the hop to higher ed.  Our allergist also went to bat with explanations of more unusual accommodations-- like individual testing.  DD is aerosol sensitive, and that being said, smelling her allergens makes her VERY anxious (gee, I wonder why?  ) and impairs her exam performance in a big way.  In a small class, she doesn't use that accommodation, mostly-- she prefers to be low key and use preferential seating (another accommodation) instead.

She also has priority registration-- and I cannot begin to tell you how important THAT has proven.  She has the ability to make sure that she can select classes that allow her enough time to eat properly, those that don't virtually INVITE other students to be bringing food into lecture, and those which are smaller (and therefore easier to exert some control over the environment and her own safety).    It also means that she can (with careful planning) stick with professors that have demonstrated a willingness to cooperate gladly. 

I really recommend going in with a 504 plan in hand-- or at least the previous school's plan.  Then, allow at least 4-6 weeks for the process to work and generate a university-specific plan.

Also, talk to your child about what s/he feels is TRULY necessary.  I had to convince DD that the testing accommodation was a good idea.  She didn't really understand just how prevalent food consumption would be around her in college.  She does now, of course-- but going in with more accommodations than you think you will want EVERY day is not necessarily a bad thing in higher ed.  They are there if the student CHOOSES to access them.

This is another big difference-- if the student chooses to, s/he can ignore the fact that the plan is on file with disability at all.  There is no mandate to use the accommodations in any class-- much less EVERY class.  It's an individual judgment call for the student.  So a class where nobody ever eats-- no announcement, no food controls are needed.  Ever.  A situation where it's a tiny class and everyone knows you, similarly-- just last night, in fact, peanut butter snacks showed up backstage at the food table-- and the stage manager simply gathered up the unsafe stuff and took it up to the tech booth instead.  No big deal.


The single hardest thing for me has been accepting that NOBODY but my DD is obligated to be responsible for her autoinjector use.  NOBODY else has to be trained, and SHE has to be pretty assertive. 


I know that there are a lot of threads about this in the past four or five years.  Mac, Rebekah, and myself have all recently navigated it-- having kids travel without us, live without us, and navigate the open and chaotic setting of a college campus without us.    Some of the most useful threads may not be in schools, but in Teens instead-- the law is different from K-12 to higher ed, after all.




Honestly-- I wouldn't assume that the person that gave you such a nasty vibe at the office necessarily sets the tone for the entire office, either.  Could have just been a bad day, could be that she's kind of a troll...  you never know.  I've also decided that I'm completely comfortable being Bad Cop to DD's Good Cop with her university, too-- so I may ask "rude" questions, or be pushier than she is... and that's just fine.

The other technique that I recommend is that we BOTH show up for a meeting, and when she's called into said meeting, I ask if she would like me to come in or not-- right there in front of whoever she's meeting with.  That way they KNOW that it's her driving my being there or not-- not me.

[hedgehog]

DD's university is full of kids with helicopter parents.  It seems to be expected, an ingrained part of the culture, there.  I am not a helicopter parent by any means.  But I spent a grid deal of time of the phone with everyone who might be somewhat involved in the situation when DD almost died on a school trip to a foreign country almost two years ago.  Trying to get her the best possible care, and keep up to date on the situation. 

And then last month she actually asked me to step in (first time since she was maybe 5 years old).  She had repeatedly emailed the person she needed info from at her school, and being overseas, could not call from where she was.  She had dealt with this person once before.  He had to sign something for her to go abroad for this semester.  She first asked about three months before the form with his signature was due.  Asked periodically over the months.  Then spent about two full days on the phone the week it was due, trying to get him to sign it and then fax it.  So she asked me to call.  I did, got the right person in under 30 seconds, and within five minutes she ecru end an email from him with everything she needed. 

So basically what I am saying, is that I am not a helicopter parent, nor do I particularly care for that style of parenting.  But there are times when the parent, even of a young adult, not a child, might need to step in. 

Also, as your DD is a young adult, would it not be her right and her decision to ask for someone to accompany her?  If you or I wanted to bring someone to a meeting, it would usually be seen as our decision.  So why not in her case?

[CMdeux]

^   


exactly.

Though we've been (over the past few months) treated as though this is DD's parents "coddling" her, or "enabling" her to avoid "growing up" and dealing with things for herself.  {sigh}

It's a no-win situation in some ways.  That's why I make them OBJECT in person, and to my DD's face.  Honestly-- I go if it's a thing that I'd be comfortable doing if DD were, say-- 25 years old and not 16.  Most of the meetings I've attended have been that type.  It angers me that some uni staffers have framed that as immaturity on the part of my 16yo for wanting someone else there.

Another option is to retain a legal advisor to attend those meetings.  That way, it isn't mom or dad.  It's just expensive.  (We've taken that approach as well, btw.)

[wackattack69]

[/quote]

I apologize if I misinterpreted what you were saying.

Since you've made it clear the only input you want is from those who agree with you, I'll respectfully bow out of this conversation now.
[/quote]
I have never said, nor insinuated, that I only wanted input from those who agree with me. I wanted guidance, some personal experiences, etc. That is all. If we only get input from those who agree with us, we never learn...and this group is for-in my opinion-learning and sharing.
Now! THANK YOU for those who have commented of late. DD does have preferential seating and the ability to test in the testing center. (her anxiety goes up as well, so that is a HUGE deal for her).
She came to me yesterday and said "if I am an adult and in charge of myself and my studies, then I can choose to have you in the meeting with me. I thought that was pretty smart. We shall see how it goes over. I am anxious to see how she does, in spite of her medical issues of late.
We did bring the 504 from high school and the accommodation plan from her college in  Texas with us...the lady literally shoved them back at us and said, "don't need em". That could be good or bad, we will see.
So, thank you all for the opinions and experiences....GET OUT FROM UNDER THAT CHAIR