1. Living with LHON: Education
Jennifer Malecha
June 29, 2019

2. Disclaimer
This information was collected from affected individuals and families of affected individuals.  Every situation is different, the degree of vision loss is not the same.  This is to be used as a tool for ideas and not intended for total educational care of an individual affected by LHON.
 We do have a panel here today and I will introduce the panel later.  After the panel has finished, we will open this up for questions and if anyone has something that has worked well for them, please share the experience.

3. Concepts Protecting Students With Disabilities What are your rights?
How can this be done at various ages?
 504 & IEP Plans
Accommodations/Assistive Technology
Teacher of the Visually Impaired (TVI)
Education options for adults

4. Issues Wide range of vision (dis)ability with LHON
Obtaining Resources and Equipment
Obtaining Accessible Materials
Informing Teachers/School/Administration
Informing Other Students
Time Management
These are some of the issues we face and why having on standard way of doing things doesn't work for LHON.

5. Rehabilitation Act of 1973
The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance, in Federal employment, and in the employment practices of Federal contractors. The standards for determining employment discrimination under the Rehabilitation Act are the same as those used in Title I of the Americans with Disabilities Act.

6. IDEA 2004
Individuals with Disabilities Education Act (IDEA). This is the law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and insures special education and related services to children with disabilities.
The most important thing I want to remind everyone is that these laws pertain to those facilities that accept funding from the government.  Privately funded facilities do not have to follow these guidelines.  As parents we can bring in our child's diagnosis to the school and think the school will help our child with an IEP/504, this is not always the case.  We must tell the school that we would like an assessment done on our child.  Since LHON is blindness that is one of the criteria that justifies having an assessment done.  The school  must do the assessment with trained personnel using the proper assessment tools and the tools must measurer what the tool says it is going to measurer.  There is to be more than one tool used.  If we as parents are not satisfied with the outcome of the assessment and feel our child needs more accommodations the IDEA act of 2004 gives us parents the right to request and independent assessment at the schools expense.  The school must then do the assessment or file due process against the parent.  

7. What is a 504 Plan
The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.
The 504 plan is a plan where you can list accommodations that your child needs.  We will look at some accommodations a little later.
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8. What is an IEP
The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.
 At an IEP meeting there is usually the parent/parents, at least one regular teacher, a special education teacher, a VI teacher or someone who can and has administered the assessment, a district representative that knowledgeable of the curriculum, knows the provision of specially designed instruction to meet the needs of the child and knows the availability of resources of the district.  Many schools forget to include the district representative and anyone else such as a social worker from the state that works with the visually impaired should attend.
To get your child and IEP takes time and sometimes up to 30 days.  With LHON time is not always on our side.  In our case, Michael was on a 504 and his vision began rapidly changing and finals were coming up. The school sent home all of the questionnaires for me to fill out.  If you haven't filled out these questionnaires they are asking similar questions over and over to see the cognitive learning of your child.  Since Michael didn’t have a cognitive disability the school was able to expedite the process and get the IEP in place prior to finals.

9. Assistive Technology
Under IDEA 2004 the law requires schools to use assistive technology devices and services to maximize accessibility for children with disabilities. 
 If your IEP team determines that your child needs assistive technology devices and services, the school district is responsible for providing these and cannot use lack of availability or cost as an excuse.
The law also requires schools to provide assistive technology training for teachers, child and family
 Schools may provide technology at school and for homework.  In some cases the technology may not go home with the child.  In these cases, check with your states visually impaired services department and see if you can qualify for any assistance in getting technology in your home.  

10. Elementary/High School
Accommodations that may need to be addressed but not limited to in a 504 and can be added to an IEP
Extra time for homework
Larger font size (if it helps)
Frequent breaks – neck fatigue, eye strain, headache
Extra time for test
Test being read
Enlarged print/ ed form format homework/worksheets
Seat placement/extra desk space near an outlet
Audio Books/Assistive technology
EA (Education Assistant) helping
Early Hall passing if necessary
These are just a few  of the accommodations that students have had.  You or your child may want other accommodations depending upon the school or how the classrooms laid out.

11. Possible Goals for an IEP
An IEP is a personalized education plan, do not use this just to accommodate, but to help your child excel.
Self-Advocacy
Orientation and Mobility
White Cane Proficiency 
Braille
Technology Training
Transition Services
These goals have smaller benchmarks/or short term goals so your goal is more attainable. 
Your school may come up with different goals for each age/grade level.  The most important thing that we can teach our child is self advocacy.  No one knows what how your child sees except your child.  They must learn to say I can't, I need, Please help....
I know that Braille is one that is considered a "hot topics".  Braille was presented in our situation as... if you were to get a job where you were speaking in front of colleagues, it is more professional to hold note cards then to have an iPad held up to your face.  In speaking with an adult with LHON, he told me that learning Braille made him feel empowered and independent.  Just like everything else, you need to do what you feel is right for you and your situation.  

12. Teacher of the Visually Impaired (TVI)
Assess and help with accommodations
May be trained in orientation and mobility to train your student
May be able to teach Braille to your student
Part of the IEP team
Knows what kind of technology will be suitable 
Helps advocate for the accommodations and technology needs
Your TVI's have been trained to help your child to get the best possible education.  Be in contact with the TVI .  If they cannot teach orientation and mobility or braille, they may recommend the school hire someone who is trained that.  Sometimes your best advocate is the TVI.

13. Accessing Information
Support
Readers, scribes
Parents, other students
Magnification
Ruby
Portable CCTV's (VisioBook, Connect 12 Electronic Magnifier, etc.) 
Talking rulers/Talking calculators
VoiceOver
JAWS
Braille
Bookshare
iPad/iPhone with assistive Apps
There are possibly several others, but these have been used by several students with LHON

14. Standardized Testing Accommodations needed for VI test-takers
ACT/SAT Test accommodations must be requested in writing and approved.
State Testing accommodations can be made and requested.
Test taking accommodations could include but are not limited to , being read, large print, oral or online.  ACT/SAT accommodations must be done ahead of time.  Make sure you or the school is requesting this months in advance.  Sometimes this needs to be listed in the accommodations part on the IEP.  Accommodations for ACT and SAT can be Braille, Audio, large print and extended time.
For State testing accommodations can be made, but if there are parts of the testing that  accommodations cannot be made like a reading portion that requires actual reading, parents remember you can always opt out of doing the state testing

15. Schools for the Blind Do your research Check out Blind Schools
How far away 
Live in/commute to
Up to date technology
Braille
Learn classes with others that are visually impaired
IEP are set up to the individuals needs as in regular schools
Learn basic living skills 
Forms bonds with others with a visual impairment
When doing your research on if a public, private or blind school is for your child, things to think about are will your child be mainstreamed in classes with everyone or will they be placed in a special ed class, with all different types of disabilities.  What are those disabilities.  LHON does not make your child unable to learn.  Your child needs to relearn how to learn without the visual cues.  Is a school for the blind going to help your child to achieve their independence and teach them how to learn.  This all depends on your child and the schools.  See what your child's needs are as every child is different and at every age your child's needs may change.

16. College & Grad School College Disability Office
College Counselors are available and helpful
Financial Aid (FAFSA)
Scholarship
Orientation and Mobility Training at school       
Learning Platform/technology for 
     online learning and class learning
Technology is it compatible with the college?
Learningally.org
For adults going back to college, you may need to provide your high school transcripts.
Things you may need to present to your college disability office may include but not limited to... Proof of visual impairment, if you had a 504 or and IEP bring that along.  This will help the disability office see what accommodations were made for you in high school.
If you need to talk to someone, your college counselors are a great resource.  
Orientation and mobility training, who is going to help you.  Is it the school or another service?
Every college has as different technology platform.  Make sure that what you are used to using is compatible.  If not, is the school able to download the information for free?
Learning Ally is a free service to help visually impaired college students going to a 2 or 4 year college for a mentorship program and once again information can be obtained at learningally.org
Check with your State Offices for the visually impaired Many states may offer aid to help with College tuition, housing and food.  Ask if there are timelines/due dates that need to be met.  
Note:  Aira currently offers grants to college students with a .edu account

17. Practical Tips
Encourage teachers to be vocal about what they write on the board
Encourage everyone to move quickly, as LHON vision loss occurs so much faster than anything they’re accustomed to dealing with
Remind the IEP/504 team that your child is different than others on these plans.  Most children with LHON do not have a learning disorder.  Help push for your student to excel.
SELF ADVOCACY!!
Helping teachers understand LHON 
     prior to class (possible power point)
The best advice to give teachers is to teach as if they are teaching over the telephone. 
You may need to remind your child's IEP team that this is for accommodations due to vision loss not a cognitive disability.

18. Philosophical Tips Self-advocacy’s important
Involve the student in discussions & decisions
Guide educators not just to accommodate the student, but to help them excel
Check out for parent resource centers in your state and webinars.
Michael Malecha's PowerPoint
My son Michael did a PowerPoint presentation for his teachers.  Every time he had a new teacher he sent the PowerPoint prior to going to class.  In this PowerPoint it explained what LHON was, his journey, what he thinks he can see and to let them know he was newly diagnosed.  After being a visual learner for 15 years he now needed to learn in a different way.  To help remind them that this is new and things may take a little longer.  He is not cognitively impaired, but just visually.  There will be a link to his PowerPoint on LHON.org as well as a link in the Facebook group Navigating education.

19. Scholarships NFB Scholarship Program College Scholarships
ABC Scholarships
Lighthouse Guild Scholarships
Christian Record Services Scholarship
AFB Scholarship
Learning Ally's National Achievement Awards
Own school, organizations like the Lions Clubs
There are many scholarships available to students who are visually impaired.   Check with your child's school.  Many times when a child becomes affected during High school, there is a fresh story there.  Many companies that give scholarships through the school will want to hear your story.  Write up an essay about LHON and how it has affected you.  This may get you more scholarship money.

20. Blindness Training What type of rehab program Basic Living Skills
Orientation and Mobility training
Find what you need to make the most of your life
Check with your State. Many states have services available.
Once you become affected you need to figure out what type of program you would like.  Do you live at home and do a day program, or and in house program where you stay at the facility.  What do you need help with basic living skills or do college courses..    You need to decide what is best for you.

21. Hadley.edu
Hadley offers several type of classes.  If a visually impaired person fills out the paper work to verify the visual impairment there is no cost to the individual.  There are classes on technology and how to use certain devices.  They do also offer other courses such as Braille

22. Being a Teacher Prove yourself – any job​
Things take longer – any job​
Behavior- be tough and firm in beginning​
Use what works best – white board/smartboard​
Magnifier, CCTV, Laptop (JAWS)​
Seems like you do a better job, always trying to prove yourself
Classroom is verbal/no raising of hands, has person say their name before question
Does have an EA in the classroom for attendance, but not to help with teaching
I spoke with a few teachers affected with LHON and this is what they feel about being a teacher. 

23. Facebook Group Navigating Education/School With LHON FB Group
There is a Facebook group that you can join that is specifically for those managing education and LHON from every perspective.  We did have 1 conference call a few years back regarding education, it was more of an open talk session where we just talked about everything.  If people feel that we should do more conference calls, please feel free to message me or post on the Facebook group.  We could do calls late summer and early spring around the times that families are getting ready to meet with schools regarding their IEPs.  We can either try to have someone talk to our group or leave it as open questions to see what is working for those and what is not working for families and students.
Maria Johnson just posted an amazing article called Resources for Visually Impaired students (Lissa Link)
Navigating Education/School With LHON FB Group

24. LHON.org www.lhon.org/living-with-lhon
Don’t forget: LHON.org is a good resource for all-things LHON.
Links to the organizations that were discussed today and many other helpful resources are located in section 6, “School/College” on the Living with LHON” page of the website.
The links are also embedded into each slide of this presentation, which will be made available to all of you following the conference.

25. Living with LHON: Education
At this time I would like to introduce the education panel today.  We have Jennifer Tylock, Donna Basse, Hector Gomez and Cindy Huiseman.