Guardianship Thoughts

Last week I watched a webinar about the Beyond Academicss Program at the University of NC Greensboro.

Last year I blogged about how impressed I was with their program after talking to them at the NDSC Convention and this webinar just reinforced to me how much I would love for Kayla to attend their program, or one very similar to it.

Just a few examples of the success their graduates have had compared to people with intellectual/developmental disabilities across the nation:

61.5% were employed compared to just 35% across the nation
54% lived independently/semi-independently compared with 36%
77% had checking account and wrote their own checks compared with 29%
92% completed volunteer/community service in last year compared with 19%
100% registered to vote compared to 62%

There was a lot of great information shared on the webinar but something stuck out to me that I didn't realize, or hadn't thought of before.

To be eligible for the program students have to be their own guardian - the parent(s) can not have guardianship.

I'm not sure if all programs have that requirement - and it's not mentioned on any of the ones I looked at on Think College, but I imagine the same would be true for any of them.

It does make sense that if you're sending your child away to a 4-yr residential program like this that you would not have guardianship of your child, but it was not something I had given a thought about.

We still have a few years left before we decide if we're going to pursue guardianship of Kayla or not. I know I don't want to have to do that, but it's something we really need to research and figure out what we're going to do.  If having guardianship impacts her ability to attend a program like this we definitely need to take that into consideration.

There are some options to not pursing full guardianship though. ABLE South Carolina has an informative video about Supported Decision Making: A Family's Perspective.

This is something we will be exploring as a possibility for Kayla.

Thinking Ahead to College

When Kayla was born, only 13 short years ago, I had no thoughts about college for her. I was still grappling with the diagnosis itself - forget thinking that far ahead to the future! Well that future is getting closer every year.

I'm not sure when post-secondary programs for students with intellectual disabilities became a reality, but I don't think there were many colleges or universities offering such a program only 13 years ago.

But now? The past several years have seen an explosion in these type of programs (the most recent statistic I remember reading put the number at over 200 programs). Post-secondary opportunities are now a realistic option for students with intellectual disabilities to continue their learning after high school.

Here is a great article on just one such program at the Virginia Commonwealth University. Even though there are now over 200 programs, as Seb Prohn, Ph.D and program coordinator at VCU pointed out, "Our best estimate is, despite the national momentum, that around 4 percent of four-year universities offer a pathway to college and a career for individuals with ID. Traditionally this group, like many others, has been excluded from higher education. The effects of exclusion are apparent in unemployment numbers and many aspects of inclusive community living." VCU must be doing something right as about 88% of it's program participants have obtained paid employment within 6 months; nationally the employment rate for people with disabilities is 32%.

Think College is an excellent resource for all things relating to college options for students with intellectual disabilities. Their website is a wealth of information from searching each state for programs, to comparing programs, to providing training and many other resources.

There are 5 options right here in South Carolina; and when we found out Joe would be stationed here after his deployment I was excited about the prospect of Kayla attending the REACH Program at the College of Charleston (CofC); and Kayla was only in 1st grade when we moved here!

After attending the NDSC Convention in Orlando this summer I think CofC might have some competition! I visited the booth for the University of North Carolina Greensboro and talked for several minutes with a currently enrolled student and her life and college experience, and then for several more minutes with a director of their program Beyond Academics. I came away very, very impressed with their program and put it on my list as an option for Kayla.

UNCG is also one of only 34 programs nation wide approved to participate in federal student aid programs. For a program to be eligible to accept federal student aid for students with ID the program has to be designated a Comprehensive Training Program by the US Dept of Ed.

Since Kayla also won a scholarship a few years ago, and all these opportunities opening up for students with ID to attend college, it's looking more and more like a reality for Kayla's future.

Whether I'm going to be able to cut the string and leave her on her own in a college environment or not will be seen when we get to that bridge! Ha! Honestly the thought of that makes me very nervous (ok terrifies me actually!) especially in another state...I have a several more years to get used to it...but I also know how quickly those years will pass!

WDSD: My Friends My Community

Today is World Down Syndrome Day: Mar 21, also written as 3/21, chosen because people with Down syndrome have 3 copies of the 21st chromosome. Trisomy 21 in medical terms.
The theme, or Call To Action, from Down Syndrome International for this year's WDSD is #MyFriendsMyCommunity: The benefits of inclusive environments for today's children and tomorrow's adults. They ask that you show the world "how persons with Down syndrome live and participate in the community alongside family, friends, peers and the public."

The more that today's children with Down syndrome are fully included in their schools and communities, the more acceptance they will have from their peers when they reach adulthood. The more inclusive settings now ... the more commonplace it will be for their future.

One of the ways individuals with Down syndrome are participating in their communities and with their peers are through higher education programs at colleges and universities across the states. Check out Think College for a list of participating programs in your state.

Students in these programs are taking some academic courses along with their peers, continuing to improve on independent life skills, and gain employment skills; along with this experience comes a full college tuition as well.

Think College provides a great list of resources for how to pay for college. One of those ways includes scholarships; there are several organizations devoted to giving scholarships to students with Down syndrome such as Ruby's Rainbow.

Ruby's Rainbow awards scholarships up to $3000 per selected student. Their 321 Pledge is simple: donate $21, pledge to be kind and considerate to all people, and ask 3 people to do the same. Will 3 people join me in donating $21 to this fantastic scholarship opportunity for people with Down syndrome?

Don't forget to also leave a comment on my 10 years of blogging post (even if the comment is just saying "Happy WDSD!") For every comment I'm donating $1 to LuMind Research Down Syndrome where donations are matched 3:1 for WDSD.

T is for Think College

More and more individuals with intellectual disabilities are finding a place at college after high school.

It might not look like a traditional college experience by the class courses/non-degrees, and in some ways some of the programs offered at some colleges aren't very inclusive at all, but there was a time when individuals with disabilities weren't even allowed on campus; so a lot of progress is being made.

Now students with intellectual disabilities are making plans to continue their education after high school by attending a college or university program designed with them in mind.

Think College is the go-to website for information about all of the programs that are offered in every state; 246 programs to date.

You can search through the various programs based on certain criteria and compare the different programs as well.

The website also has a list of resources for families to get more information about transition planning and participating in post-secondary education.

Think College is doing a lot to advance the opportunities for individuals with intellectual disabilities. Here is a document on Building Inclusive Campus Communities: A Framework For Inclusion.

Now that Kayla is in middle school it feels like her school years are going warp speed and she'll be finished with high school before I know it. I'm glad that she will have opportunities and choices available to her for post-secondary education, like the REACH Program at the College of Charleston, especially since she has a scholarship waiting for her.

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G is for Graduating

Following on the heels of my expectations post is this one about graduating from high school.

Throughout Kayla's earlier years I heard a lot of stories about students with Down syndrome graduating from high school and that we shouldn't take her off the diploma track when it came time to make that decision (in elementary school no less).

But then reality set in. She started school. We moved to SC. Every state has different laws about what a student needs to do to earn a diploma. Some states allow students with disabilities to receive a diploma even if they aren't completing all the same levels of coursework requirements. SC does not. They do not have a diploma, at this time, for students with intellectual disabilities. Here is a link that shows the different options for all the states; and the map shows which states do not allow for a regular diploma if the student is taking the AA-AAS (Alternate Assessment for Alternate Achievement Standards) - SC is one of a handful of states that doesn't have a regular diploma.

The requirements for the diploma itself are probably pretty standard - must have 4 credits or English, 4 credits of Math etc, etc. You can not earn those credits if you are receiving a modified curriculum. There are some students with Down syndrome who can 'keep up' with their peers and classwork and don't need modifications to the curriculum, only accommodations; but Kayla is not one of those students and we realized that early on. ADHD might have something to do with that - if she is so easily distracted and losing focus she is losing precious time on gathering and digesting and learning the lesson.

So what does SC offer? They offer certificates. One of which basically says you attended high school, and the other says you completed the 4 yrs of Life Skills English/Math etc, etc. (which means all your academic courses are in a self-contained classroom.)

There is legislation in the works for SC DOE to offer a Special Education Diploma. A diploma that looks just like a general education diploma except it would state Special Education. At first I was pleased to see progress made in that area. I would like Kayla to receive something more than just saying she showed up, or that she had Life Skills. However, the language in this bill is similar to the Occupational Certificate that's now available; it seems to be written with the intent that the students will be in segregated, self-contained classrooms. That is a disappointment.

We could keep her on the 'diploma track' but I know she wouldn't be able to do the coursework without modifications, that is just the reality of where we are right now.

It hasn't been an easy road to accept this; what parent doesn't want to see their child be able to graduate from high school? But someone pointed out to me that all those college programs you can find on Think College don't require a H.S. diploma. They are there for the students like Kayla - the students who can't earn a general education diploma, because if they could earn the diploma without modifications they wouldn't need to enroll in one of those college programs, would they?

There is still a bit of sadness for me, that she won't be able to get a traditional diploma; even if she attends the private high school that her current school 'feeds' in to, they offer a certificate too.

I don't know what the answer is. Of course I'm not saying that Kayla should be handed a diploma, just because, when she didn't earn the right to the diploma by being able to pass the general ed classes without modifications, but I wish our state had something similar that other states offer - something that wouldn't guarantee she would have to be in self-contained classes to get said diploma.

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I Failed As An Advocate

Several people have left comments on previous posts relating to Kayla's middle school situation asking if a decision has been made on her placement.

The answer is yes ... and no.

The longer answer is that I failed as an advocate.

When we had our IEP meeting with the middle school team we were hoping it would be a somewhat quick meeting to discuss her placement. We had a previous meeting the middle school team wasn't available for when we discussed Kayla's progress, present level of performance, & suggested goals for next year. I didn't think we were going to go over all that again, but since the middle school team wasn't there for that the meeting started off with that information.

Our kids were with us in the meeting. I brought snacks and other things to keep them busy, but let's face it - after spending all day at school the last thing they wanted to do is sit in a conference room. They were very well-behaved though and quiet throughout the meeting.

By the time we got to what I think of as the nitty-gritty of the meeting, we were about an hour and a half into the meeting. I had a feeling this could become a long discussion.

As the discussion progressed we realized we were up against another brick wall. We realized we were up against all the same arguments and resistance we were met with throughout the elementary years.

When someone from the middle school team was looking over the example of modified science materials Kayla's gen ed teacher brought and said, "What is the benefit ...?" and trailed off speechless with a look of disbelief on her face, I have to admit I mentally checked out. In my mind the meeting was over. I was done.

I was absolutely done with all of it. I was done with the last few years of meetings consisting of eye rolls, sighs, facial expressions, and side whispers. I was done with feeling like we were crazy for suggesting our child could be educated in the general education setting. I was done with the animosity. I was done with the tension. I was done with the negativity.

I knew it would be fruitless to again present so much evidence - so much! - to show best practice, to show research, to show successful inclusion, all for naught.

I was done with trying to explain how this can work. I was done with hoping that one person on her team would finally say "Let's figure out how we can make inclusion successful."

With that comment of "What is the benefit?" I knew what kind of walls we would be facing because we heard a similar comment of "What's the point of even teaching her about the Civil War?" from someone at the district level at a previous IEP meeting. I knew this disbelief of an inclusive education for students with disabilities is from the district level on down to the school level.

We were tired of hearing she didn't belong in a ged ed room because it wasn't beneficial to her - because she would be like "a one-person classroom within the classroom", "in her own bubble in the back of the classroom", that "the aide would become her teacher and she would be getting most of her instruction from the aide instead of the highly qualified special ed teacher." Yes that's how 'inclusion' looked because that's how they did inclusion, because that's the way they made it happen.

The district does not have an inclusion plan in place; they do not regularly, or routinely, make it a practice to educate students with intellectual disabilities in the ged ed setting, unless they are near grade-level. IDEA does not say a student has to be close to grade level or that they need to earn their way in to a ged ed classroom.

How do I know this? Statistics paint the picture.

In 2013 there were a total of 82 students with Mild Intellectual Disability as their primary diagnosis in Elementary (27), Middle (22), and High School (33).

Out of those total 82 students ONE was included in gen ed for 80% or more of the day. (I don't know if that student was elementary, middle, or high.)

Out of those 82 students only 17 were in gen ed 79-40% of their day. I wish I had the breakdown of how many of those 17 were in gen ed near the 79% and how many were included near the 40%.

Out of those 82 students SIXTY were in gen ed for less than 40% of their day. (The remaining 4 were homebound/residential facility).

So 73% of students with mild intellectual disabilities are in gen ed for less than 40% of their day.

That's how inclusive education looks like in this district - virtually non-existent.

So it's not just that Kayla's needs are too great to be met in a ged ed classroom, but it appears the vast majority of students with mild intellectual disability can't be educated in the gen ed classroom for their core academic classes. Because less than 40% of their day really means they're only being included in fine arts, lunch, and recess... and I hardly consider that time to be 'general education' time.

Their placement recommendation would have Kayla fall in the less than 40% of her day category; a more restrictive placement than what she had this year.

Why is the percentage of time included in gen ed so important to me?

In a coincidence of timing I read a blog post after I got home from that meeting about suggestions to parents of children with intellectual disabilities to prepare them for college.

Among the several tips from Daivd L. Westling, Ed.D and Kelly R. Kelley, Ph.D. from the University Participant Program at Western Carolina University in Cullowhee, NC was one a tip on inclusion. In part, the tip said, "Even though it might take extra effort on your part and on the school's and teacher's part, inclusion is the best education for someone who wants to go to college."

We did let the team know that our goal and vision for Kayla is to attend college if she so chooses and she needs to be included to help make that a successful transition.

This is where I failed as an advocate. We probably broke every unwritten rule for parents of what not to do in an IEP meeting.

Because I was done mentally and emotionally, I was done fighting with the district, and in my mind she wouldn't be going to that school next year anyway (more on our options in another post), we caved.

We wanted the meeting to be over. We didn't want to drag it on any longer in a futile effort to maybe get our daughter reluctantly included at a minimum in science and/or social studies.

We should have called an end to the meeting and reconvened at a later date, but we basically said "fine" with their recommended placement because I didn't care anymore and we wanted to get out of the meeting.

I know that was absolutely not the right thing to do in an IEP meeting; believe me I know. I just can't emphasize enough how much I was done with the whole thing.

I reacted irrationally based on emotions - again - not the best way to handle an IEP meeting.

I figured that if other options didn't work out and we had to continue with her going to this school that we would request an IEP before school started, and we would ask Protection and Advocacy to represent Kayla; again. P&A represented Kayla a couple of years ago and while it ended up being a moot point, she initially took the case because they were suggesting a more restrictive placement. We would have another case against the more restrictive setting so we should not have agreed to that IEP and instead just requested another meeting.

Truthfully I was not mentally prepared to have to go through yet another stressful meeting with more of the same.

So I failed as an advocate by saying "fine" to be done with it, because I knew we had other options and I didn't want to discuss this middle school placement anymore.

I know that if she does end up at that middle school that they will have to follow that IEP as written and that was our mistake to leave it like that. We will have to request another meeting and start the process all over again. To prepare for that possibility we shouldn't have agreed to that placement, but we will cross that bridge if we need to.

For now we are hopeful that she will be attending another middle school.

How Inclusive Are Post Secondary Programs?

Shortly after learning about the College of Charleston's REACH Program, and then moving to SC, I read an article that stated SC was leading the way in post-secondary opportunities for students with disabilities by having 5 colleges and universities in the state with such programs.

That was exciting news. Wow! SC is actually leading the nation in programs being offered to students with disabilities who wanted to continue their education after high school.

I might have even used that quote a time or two, or three, in IEP meetings. "This state is actually leading the way with post-secondary programs for students with disabilities at 5 colleges/universities, yet we can't figure out how to successfully include students with disabilities in the general education classroom at the earliest of school years - the elementary level?" It was one of my arguments for Kayla's least restrictive placement to be the general education classroom ... how is she going to be prepared for a post-secondary inclusive program if she is in self-contained classrooms?

A few months ago I did a little more research into these programs. I knew more about the REACH program since we are in the Charleston area, but I didn't know much about the other programs beyond being aware of them and that they are at Clemson, University of Carolina, and Coastal Carolina University. (And looking at Think College I see there are 6 programs in SC with another one being at Winthrop University).

I used Think College's compare tool to compare the programs in SC and have to say I was saddened and disappointed at some of the comparisons.

I didn't realize how un-inclusive a couple of these programs are. I didn't realize how much some of the students were segregated.

In the "Entrance Requirements" one of the programs specifically states "Fall within a specific IQ range" and that program and another one also state "have a specific disability label or type."

So people like my daughter still can't get away from being identified by their IQ and being labeled.

If you are applying for entrance to one of these programs I'm going to guess it means you weren't able to complete the state requirements of a traditional high school diploma. So what do the entrance requirements of the programs look like if they aren't focusing on IQ and disability labels?

They have requirements like this: other diploma, have basic safety skills in unsupervised situations, completed a certain number of years in high school, but nothing else about their specific disability type or label.

Another category of comparison is how much of the instructional time is spent only with other students with intellectual disabilities. Two of the programs list 75% and one is listed as 50%.

That is what saddens me. For two of those programs, the students are only with other students with ID for 75% of their instructional time. Where is the inclusion? Where is the corroboration?

And then there are the housing options. For one of the programs it lists, "Special section of a dorm or other special housing only for students with intellectual disabilities" and "Inclusive off-campus apartments".

Talk about segregation! They need to have a special section of a dorm or special housing only for students with intellectual disabilities. Yet they also list inclusive off-campus apartments as an option. How can they have inclusive off-campus options but not inclusive on-campus dorms? 

I did comparisons of programs at other states and found more than one reference to:

Have a specific IQ range; disability label or type

Time spent with only other students with intellectual disabilities: All The Time

Housing options: There are no housing options for students with intellectual disabilities

Special section of dorm or special housing

More often than not the amount of time spent only with students with ID is 25% and housing options are inclusive dorms - so that is promising! But the ones that don't even offer inclusive housing options? I thought we were moving away from segregation.

I realize these types of programs and opportunities weren't available in the not-so-distant past and I am thankful that society has realized people with intellectual disabilities have the potential to continue their education and that programs are in place to help them do so.

I realize that not all students with intellectual disabilities will be able to access the college-level courses in the same way as their typical peers; hence the need for the programs to exist at all and the need for accommodations and modifications to adapt the curriculum.

I just wish there wasn't still so much segregation happening in some of these programs.