October 2017 SHOUT OUT!
 
The routines of daily living skills are so very important to good health and independence as our children learn and grow.  Dental hygiene is of great importance, in my opinion.   Children and youth who have sensory loss or tactile defensiveness, don’t always enjoy brushing teeth.  For our son, it was an activity that he grew to enjoy and one in which we built in a lot of communication opportunities.  So, in order to make sure this activity was effective, even when fine motor skills were still being developed, we discovered a type of toothbrush that was most helpful whether we were brushing with our son or he was doing it himself. 
 
While this is not an endorsement of a particular brand, we were introduced to the Surround Toothbrush, which describes its use this way:
 
The surround toothbrush is designed to make the brushing easier for those who cannot use a conventional toothbrush or who have difficulty with motor skills and coordination. The surround toothbrush has 3 rows of bristles that surround the teeth to clean front, back and biting surfaces all at the same time. 
 
There are other brands that sell similar versions.   Pictures of the toothbrush we used are attached.   The experience was enjoyable and leaves me with great memories of what might be considered a mundane task. 
 
Happy Brushing!! 
 
Molly, mom to Alex and PPDB Board Member

​

In case you haven’t heard, PA has a new way for families to save money for a family member who has a disability. It’s called PA Able. This is a wonderful new program that allows an individual to save up to $14,000.00 a year without it effecting other benefits like SSI. Money can be saved and used for tuition, educational supplies, housing expenses, transportation, health prevention and wellness, medical equipment, respite care, assistive technology and more.​

The PA Able website, paable.gov has a wealth of information to share. If you go to the Overview section and scroll down, there is a link “Overview FAQS” to Frequently Asked Questions. Take a moment to look over this very helpful, easy to read information.

Enjoy the rest of your summer, PPDB

Pennsylvania’s Summer Academy’s
 
Summer Academy’s for Students that are Blind or Visually Impaired are programs that are through the Office of Vocational Rehabilitation/Bureau of Blindness and Visual Services (BBVS) in partnership with Department of Education/Bureau of Special Education, Pennsylvania Training and Technical Assistance Network (PaTTAN)
 
JR SUMMER ACADEMY FOR STUDENTS WHO ARE BLIND OR VISUALLY IMPAIRED 
(GRADES 6-8)
 
JSA is an opportunity for students in grades 6-8 to interact with peers with visual impairments, create lasting friendships, get to know themselves, and explore their capabilities in a fun and educational setting. Focus areas include: assistive technology, vision rehabilitation therapy, orientation and mobility, vocational development, low vision rehabilitation, social work/counseling and guidance, teambuilding and recreation.
 
The academy features five days filled with exciting and engaging experiences on a college campus designed to promote access and utilization of assistive technology as it relates to your daily life, travel, school and future employment.  The students reside at Kutztown University – stay in a dormitory room shared with another student and eat at a campus dining hall.
 
SUMMER ACADEMY FOR STUDENTS WHO ARE BLIND OR VISUALLY IMPAIRED
(GRADES 9-12)
 
Pennsylvania State University College of Education and College of Health and Human Development, in conjunction with Penn State Conferences and Institutes, hosts the Summer Academy for Students who are Blind or Visually Impaired at Penn State’s University Park campus every summer.
 
Summer Academy is a three-week, intensive program focused on enhancing independence skills for students transitioning to post-secondary education. It is available at no cost to eligible students who anticipate attending a two- or four-year college or technical/trade school after graduation.
 
The academy’s primary focus includes: daily living activities, travel skills, self-advocacy and networking skills, career awareness, social skills, enhancing access technology skills and low-vision rehabilitation.  All students attending the academy reside at Penn State University in a dormitory. There the students share rooms with other students, eat meals in a campus dining hall, and immerse themselves in other activities reflective of college life. The program also offers an optional STEM extension week, in partnership with PSU, Science U and the Materials Research Science & Engineering Center.
  
SUMMER ACADEMY FOR STUDENTS WHO ARE DEAF OR HARD OF HEARING
(GRADES 9-12)
 
Sponsored through The Office of Vocational Rehabilitation (OVR), Bureau of Vocational Rehabilitation Services (BVRS) in partnership with the Bureau of Special Education’s Pennsylvania Training and Technical Assistance Network (BSE-PaTTAN).
 
Successful college students are hired as Resident Assistants to live and attend classes with the program participants and serve as mentors. These Resident Assistants insure the safety of the students and assist with the classroom instruction. 
 
The Academy features a two-week experience building on current student skills and enhancing independence skills for students transitioning to post-secondary education.  Available at no cost to eligible students who anticipate attending a two-year or four-year college or technical/trade school after graduation from high school.  Focus areas include: self-advocacy and networking skills, career awareness, social skills, communication access options awareness, and enhancing access technology skills.  Students reside at Penn State in a dormitory, sharing a room with another student. 
 
On a personal note.  My son who is 12 years old entering 7th grade this year attended his first sleep away camp at this year’s Junior Summer Academy.  What a success!  He has full intentions of taking the next step and attending the Summer Academy at Penn State when he becomes age eligible.  
 
Tammy Kitterman
Vice President, PPDB

A friend shared this information with me and I would like to pass it along to all of you.  

The link below is for the Pennsylvania Department of Human Serviced Medical Assistance Transportation Program.  This is a mileage reimbursement program for when you take your children to and from the hospital, doctor appointments and even to their medical daycare!!

If you child is on Medicaid s/he will automatically qualify for this service.  

Information:  http://matp.pa.gov/
Application:  http://www.alleghenycounty.us/Human-Services/Programs-Services/Basic-Needs/Transportation/Medical-Assistance-Transportation-Program.aspx
(scroll down to the registration section and the hyper link will take to you the application; also attached)


I hope you all have a wonderful day!!

​

What’s in a network? I firmly believe everyone needs a group or system of interconnected people or things on the journey we call life. Over the years my husband and I have built a network of friends, co-workers, and social groups. I appreciate the insurmountable support we’ve received from our network in the Deafblind community, the parents and their children have been inspirational and willing to answer questions and share their experiences with us. 

When our daughter Savannah was much younger we struggled to find programs and services that were right for her. We had never heard of a dual sensor impairment and had a lot to learn. Having such an awesome network of parents, therapist, and educators willing to share experiences and help us navigate has allowed us to see the possibilities for Savannah. And watching some of your children at varying ages has helped us envision the types of things our daughter may be able to do.  

I just hope we can pay it forward and be an example to other families. Of course Savannah is still writing her story and no one knows what her “happier ever after” will be, but I’ll getting my popcorn ready because this is going to be good. 

Thank you all for being...
pioneers 
awesome parents. 
a blessing and example my family
and most of all a part of our network. 

As family members or friends with someone who is deaf-blind, it is often difficult to find appropriate information when needed.  We know PPDB  February Shout Out:
 
As family members or friends with someone who is deaf-blind, it is often difficult to find appropriate information when needed.  We know Knowledge is Power ~but sometimes we just don’t know where to find information particular to deaf-blindness.  The best resource to share is our National Center on Deaf-Blindness. Have you had a chance to check out their website?   It is a one stop shop!  One can find information to help self-educate, informational documents to share with educational teams, community members, and support staff. There is information on specific etiologies, state directed information and the list goes on.  There are public groups to join such as Early Intervention, Family Engagement, Interveners and Qualified Personnel, Literacy, Transition, and more.  There is guidance and direction to gain, learn, and share, with the occasion to network with others nationally.  There are forums, shared materials, blogs, and multiple ways to interact.    A community has truly been built for us on this website.   Have you become a member and created a profile yet? It is free!  I would like to take this opportunity to invite you to do so.

Here are the steps:
 
Step 1: Go to nationaldb.org
 
Step 2: Click on "Make a Profile" in the upper right-hand corner of the screen
 
Step 3: Fill in the information requested and click on "Create My Profile"
 
You're in! Now you can join the group(s) of your choice
 
Step 4: From any screen on the website click on the "Connections" tab (it's in the bar across the top of the page) and choose "TA Initiative Groups"
 
Step 5: Click on the group of your choice  link
 
Step 6: In the upper left-hand corner of the screen click on "Join Group"
 
You will then become a member of the group(s) you have chosen to join.  You  can post to the forum if you wish. Remember that although you have to be a member to post, this is a public group and posts can be read by anyone, so take care not to post personal details.
 
The next time you come to the website, it is less complicated and you don't have to go through the 6-step process. Instead, just follow these steps:

• Login (in the upper right-hand corner of the screen) using the username and password you chose when setting up your profile.
• You will then see your name (also in the screen’s upper-right corner). Click on the "down" arrow next to your name. The names of any groups you belong to will appear.

OK, Happy end of the month Shout-out. I apologize for getting this out so late in the month.

Many of you are already aware of a Federal bill that is currently in the House, H.R. 3535, the Alice Cogswell and Anne Sullivan Macy Act.

On March 2, 2016, the Deafblind Coalition is sponsoring an advocacy day on Capital Hill to bring awareness to the bill as well as to highlight the needs of individuals with deafblindness. Family members and professionals from across the country wil be there to talk with our the representatives and senators. While we know that many people cannot travel to D.C., you can help support this bill.

Parents have great influence on our legislators and no one can better share their personal stories than you. Please take some time to review the bill and contact your local representatives and ask them to support H.R. 3535.

Here are just a few important highlights:
*Continue to support a continuum of service delivery options providing the individualized supports and services to students
*Provide professional pre-service and in-service training to staff to insure qualified staff are teaching your children
*teach the expanded core curriculum
*require all states to have certified teachers of the Deafblind and Interveners

Please use the link below for more information about the bill and what you can do. I'm also attaching an outline from information that I have shared with our parents. It focuses on the sections of the bill supporting children who are blind or visually impaired or deafblind. Please remember that there is also a significant section that addresses the needs of children who are Deaf or hard of hearing. That part is not included in my outline, but is just as important.

This bill is intended to support the needs of children with sensory impairments. It is meant to strengthen what is currently in IDEA, not to replace it. Please consider contacting your representatives. You can use the link below for more information.

http://www.afb.org/info/get-connected/take-action/12