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Friday, December 1, 2017

#MyGivingStory @ https://goo.gl/7371V8

***PLEASE VOTE DAILY UNTIL 12/8 AND SHARE ***

My daughter is 22 years old and graduating December 15th from North Carolina State University, Summa Cum Laude. She lives in an off campus apartment and belongs to a sorority. Her dad and I are very proud of her. Sounds pretty typical for a college student, right? 

What you don't know from my description is that she has spastic quadriplegic cerebral palsy and cannot walk, talk, feed or dress herself, or even go to the bathroom by herself. She uses a power wheelchair and augmentative communication device to speak. She has personal care attendants to help her with her daily living activities. 

When she was born, I spent a lot of time asking myself, "why me?" When your child is born with a disability you lose the dream of the child you were expecting. Everyone thinks their child will grow up to be something special, maybe a football player, cheerleader, or maybe even president. Suddenly, your child's future is a big question mark. It's a dark and scary place to be. 

I was a manager for a fortune 500 company when my daughter was born and being a stay at home mom was not something I had envisioned for myself. However, my daughter was soon doing eight different therapy sessions a week and there wasn't really time for me to work. I felt that if I worked hard enough on her, she would be able to overcome her difficulties. Over time, the "why me," evolved into "why NOT me?" as I realized that my daughter would have the benefits of a financially secure college educated family with good health insurance and the time to devote to advocating for her to receive everything she needed. 

My daughter was included in regular classrooms despite her physical needs for additional supports. Thank goodness that computer technology was expanding by leaps and bounds at this time and she could use it to level the playing field for her scholastically. Every year was a transition and she had to prove that she belonged in regular education and could do the work if given the appropriate supports. 

I also learned very early that the best way to heal myself was to give back to my community. I have volunteered and raised money for several disability related organizations geared towards helping families of children with disabilities. I truly believe that my life's purpose is to showcase kids like my daughter and help them achieve their highest potential, whatever that may be. Luckily New Voices Foundation came along and has graciously given me a platform to do so. 

Over the past 10 years, New Voices has provided hundreds of hours of training to those who work with kids like my daughter so that they can be the very best at what they do. New Voices has also provided hundreds of thousands of dollars of equipment to our local schools systems to help them meet the needs of these very complex children. New Voices advocates for these children to ensure they get the resources they need. New Voices is literally a voice for children who have none. 

This is my giving story. Please think of my daughter at 2:00 p.m. EST on December 15th when she dons her cap and gown and rolls across the stage to accept her diploma. New Voices is working to ensure that she is not just the exception but the norm for kids like her.

Tuesday, November 7, 2017

Wise Words from Sharon Draper

Our friend and author, Sharon Draper, posted on Facebook about why she wrote Out of My Mind.  For those of you who haven't read it, it's the story about a New Voices child.  Melody is a young girl with a communication and physical disability whose potential is really underestimated.  Melody finally gets a communication system (which at the time it was written was a figment of Sharon's imagination) and Melody begins to share what she knows.  The other theme of the book is about acceptance, which is what Sharon posted about today.  Here is her post: 

"Kids with disabilities are just like their peers. They want to be accepted, to have friends, to be included in the social life of the school. Melody in "Out of My Mind" understands the pain of being ignored and overlooked. I gave her a voice to show her humanity. She represents all those young people, who have feelings as well as dreams. I wanted to give those kids, who are often treated as if they are invisible, a chance to be heard, to be seen as the individuals they are, not the machines they ride in, or the disability that defines them."

Thank you Sharon.  Here is the link to her post on her Facebook page. https://www.facebook.com/sharonmdraperofficial/

Thursday, September 21, 2017

Not Just a House but a Home

Let's face it....mom and dad are not going to live forever. It's never too soon to start thinking about the appropriate housing solution for a child who will require additional supports all their lives.

Attached is an article about a concept called co-housing. It's one of the ideas that I'm hearing about at meetings that I attend.It's exciting to see options that more closely resemble what we truly want for our kids; safety, dignity, choices, and supportive community.

https://www.indyweek.com/indyweek/how-the-triangle-became-ground-zero-in-the-cohousing-movement/Content?oid=7724948




Thursday, September 7, 2017

Communicating during an Emergency

At the State Employees' Charity Campaign kick off I was approached by someone asking if I had access to some communication boards that were specific to emergencies. I received this today from the Augmentative Communication Online Users Group @ acolug@listserv.temple.edu .  

"Given the potential for disastrous effects of hurricane Irma, the importance of communication during times of emergency is heightened.
Here is a link to downloadable free communication boards that were developed after Katrina for communicating during times of emergency. Please go to this link http://disabilities.temple.edu/aacvocabulary/e4all.shtml#index
to find the actual boards and how to use them. Please share these communication boards widely. They are in English,Spanish, and Haitian Creole.
Be prepared and be safe"  

Tuesday, August 29, 2017

Grandparenting a child with a disability? How Can You Help?

Gram Power 101

If you are a grandparent of a special needs grandchild, then this series may be just what you are looking for. Learn about the several major developmental disabilities and the many categories of exceptional children. Discuss ways to understand and help your children in working with their children with special needs. The program, structured over four sessions, organized as follows:


Four sessions: Thursdays, Oct. 5 & 12, Nov. 9 & 16. 10 am – Noon. Fee: $20
Session 1 – Children with Special Needs and their parent’s journey. The important role of Grandparents.
Session 2 – The varieties of special needs and the “Five Bumps in the Road”.
Session 3 – Different Cases – Different Places. Transition Issues and Community Living.
Session 4 – The Law, Services, Resources and Issues.

INSTRUCTOR:Dr. Don Stedman

Don Stedman is a Developmental Psychologist and UNC – Chapel Hill Emeritus Dean and Professor of Education and Child Development who has worked with children with developmental issues and their families for over 45 years. He is former Associate Director of UNC – Chapel Hill’s Frank Porter Graham Child Development Institute, former Director of the Vanderbilt /Peabody Kennedy Center for Research in Child Development at Vanderbilt University, and former Pediatric Psychologist at the Duke University Medical Center. He loves working with grandparents because he is one, too!

COURSE #3512

Link for more information

and to register:

Wednesday, August 9, 2017

State Employees Combined Campaign Kick Off

SECC #3912

https://lh3.googleusercontent.com/2D9V1FkUF8UDOd1oDOMTTPV6-JG5VJSn7P7s8k5XVVTyfFESDN_SxB_JUY7W5ut-380UzG9qrpQ5agOzSUxraqyFqmMEDlO5BUDGQh_nRYIUuylaSLelpcu9Yxa7Blgwfg

DATE:                            Friday, August 18th
TIME:                            11:00 a.m. – 1:00 p.m.
LOCATION:                   Bicentennial Mall, 
                                      Downtown Raleigh, NC


New Voices is pleased to announce that we have been chosen as one of the agencies included in this year's State Employees Combined Campaign. We will be out on the mall next Friday with information about our organization and something for all who stop by! Come see us and remember our number 3912.  

Saturday, June 17, 2017

2017 Stephen E. Sallee Assistive Technology Award of Excellence

The Grant Advisory Council for the North Carolina Assistive Technology Program is currently receiving nominations for the Stephen E. Sallee Assistive Technology Award of Excellence. The purpose of the awards is to recognize individuals who have demonstrated leadership in promoting the use of assistive technology for North Carolinians with disabilities. An award is presented in two categories: the AT User and the Professional/Advocate/Volunteer categories.

One of the greatest honors is to be recognized by your peers.  Please take the time to share information and nominate an individual or organization who you believe is deserving of recognition.  This is a great time to recognize people and/or organizations who have done great things in our state in assistive technology.  The Grant Advisory Council is accepting nominations now.  The deadline for submitting nominations is Noon September 15, 2017Award winners will be announced and honored at the 2017 Global Rehabilitation Enhanced with Assistive Technology (GREAT) Conference on October 19th, 2017 in Wilmington, NC.

If you have any questions, please contact Frank Harden at NC Assistive Technology Program at 919-859-8360 or frank.harden@dhhs.nc.gov.  

A copy of the nomination form is attached, and additional information about the award nomination process and when and where the awards will be presented is described below:


Friday, June 9, 2017

Have you seen Certain Proof??

Certain Proof is a documentary about three children who constantly have to prove their ability to learn.  Certain Proof is available for purchase on iTunes.  New Voices coordinated the production of this documentary to raise awareness about the underestimated potential of children who struggle to speak and walk.  It has won several awards and has been seen by people in many countries. It is also a great teaching tool for new teachers, therapists, and others who work with our kids. If you would like to organize a screening, please contact New Voices. Maybe one of the kids will be available to meet with your group!

Kay is now a senior at NC State and will be graduating in December 2017 with a degree in Political Science with minors in Accounting and Nonprofit Studies.  She will graduate with highest honors.

https://youtu.be/STiJwRPVZCs

Friday, June 2, 2017

One Site - All Services - Wake Network of Care

Wake County has invested time and talent to create a a one-stop resource directory to help you locate needed services and supports throughout the Wake community.  The good news is that it is there is a way to add your organization, make changes, or notify them if the link is no longer working. This should go a long way to ensure that the data is up-to-date.  Here is a link to Wake Network of Care.

Take some time and explore the extensive list under Service Directory. While there isn't a dedicated "Disability" section, there is a Intellectual/Developmental Disability section, as well as an Education section. 

Thursday, May 25, 2017

With a Click of a Flic

Loving me some technology!

There are more and more products, not specifically designed for persons with disabilities, which have great applications for PWDs (people with disabilities).  I recently found Flic.  It’s a one inch button that wirelessly connects to a smartphone or Iphone that can be programmed to do a number of tasks, including turning smart lights on and off, making phone calls or sending texts with a click. Imagine being able to call for help when you can't reach your communication device! We are using Flic to send a text that says "I need HELP" and shows where you are located.

It costs less than $35 on Amazon.
Did you know – if you shop online at Amazon, they will donate 0.5% of the price of your eligible purchases to the charitable organization selected by you (I hope you will choose New Voices Foundation!).   https://smile.amazon.com/  Same products and prices as the regular amazon site.

#MyGivingStory @ https://goo.gl/7371V8

***PLEASE VOTE DAILY UNTIL 12/8 AND SHARE *** https://goo.gl/7371V8 My daughter is 22 years old and graduating December 15th from Nor...