Family Voices

Planning for your youth’s future is important for families of special needs children and youth. Because families are so busy just looking after the day-to-day needs of their children, transition needs and financial planning are often overlooked. The financial planners at Capital Financial Group understand the challenges facing families of children with special needs and, therefore, want to offer this workshop on beginning the financial planning process.

In this special joint session, Family Voices of Tennessee will offer information, tips and tools regarding the transition from pediatric to adult services, Capital Financial Group, LLC will cover topics of financial planning, and James E. Maurer & Associates will provide information on special needs trusts and conservatorships. Their free advice will prove to be essential as you begin to make these significant decisions.

This special event is FREE to the entire community!

WHERE - Vanderbilt Kennedy Center, Room 241, 21st & Edgehill, Nashville, TN 37203

WHEN - August 31, 2010 @ 6:30pm

Register with Family Voices of Tennessee by calling (615) 515-8628 or emailing julie_s@tndisability.org

Sponsored by Family Voices of Tennessee, a project of the Tennessee Disability Coalition, Capital Financial Group, LLC and James E. Maurer and Associates.

On August 28thth, Family Voices will be co-sponsoring a Family Outreach Conference to educate families of parents with deaf or hard of hearing children.  Our goal is to inform families of their options of communication, amplification, and education; help them to understand audiograms; and educate the families on the different types of hearing loss.  We also would like to provide the opportunity for families to connect with other families that have children that are deaf or hard of hearing.

Since Shelby County has the lowest rate of follow up after the failure of the initial newborn hearing screening in the state, we want to have this event to raise awareness of this issue and increase the follow up rate.  In order to do this, we are going to educate these families in the importance of detecting hearing loss as soon as possible.  Then families can have the best options for their child in the areas of communication, reading, and learning.

This event is free to families, but registration is required (see form below).  The event will feature:

• Free Speech and Hearing Screenings
• Sessions on:
  
• Understanding Audiograms
• Communication Options
• Deafness Advocacy
• Parent Notebook
• Assistive Listening Devices
• School system options in Shelby County for the Deaf/HH
• A Parent Panel of Parents with children that are Deaf/HH
• Door Prizes
• Vendors who have services for the Deaf /HH and will be on site through the day to share their resources with families
• Day care and activities for the children         
  

Event Sponsors:

• Family Voices of Tennessee (a program of the TN Disability Coalition)
  
• University of Memphis School of Audiology and Speech-Language Pathology Departments
• National Student Speech Language Hearing Association
• TN Newborn Hearing and Screening Program

To Download Registration Form

To Download a Flyer in PDF (same information as above)

To Download a Flyer in MS Word (same information as above)

If your youth has special health care needs and/or disabilities, you both will want to join Family Voices of Tennessee at the Tennessee Disability Coalition office for a movie, pizza and an opportunity to learn about transition issues from pediatric to adult health services. This Friday night beginning at 5:30pm.

Date: April 16, 2010
Time: 5:30 - 8:30pm
Location: 955 Woodland Street, Nashville TN 37206

To join Family Voices and other Metro families, please call Tonya Bowman at (615) 383-9442 to reserve your seat or write to her at hearfvmiddle@tndisability.org. Please leave your name, number and how many will be joining us for Watch and Learn.

To download a PDF Flyer - contains the same information as above.

As you have no doubt heard by now, THE critical vote on health care reform - and the future of Family to Family - is expected to take place at the end of this week in the U.S. House of Representatives.  Please - on your own time and using non-federal resources - call your U.S. Representative to urge him/her to VOTE YES on the health care reform legislation.

The bill would extend funding for F2F Health Information Centers at the current level of $5 million for an additional three years - federal fiscal years 2010, 2011 and 2012.  (We are currently in FY 2010, so the bill would continue funding without interruption.)  For more information on how the bill would affect children with special health care needs, please see below. 

How to call:  You can reach your Representative's office through the Capitol switchboard at 202-225-3121.  If you are not sure who your Representative is, go to the upper left corner of www.house.gov and enter your zip code.

What to say:  When calling your Representative, let the office know that you are a constituent, and that you are calling in support of the health care reform bill, and a particular provision in it.  They may want to know only whether you are for or against the health care reform bill.  That's okay.  If they are receptive to taking more information, though, let them know that (in addition to the other reasons to vote for health care reform) the Senate-passed bill on which they will be voting includes a provision that will extend funding for your state's Family-to-Family Health Information Center.  You will have to name and briefly describe the F2F and why it's important to you and other families.  Of course, feel free to mention other reasons you support the bill as well, such as the provisions that will help children/youth with special health care needs (e.g., elimination of pre-existing condition exclusions).

NOTE:  If you already have a relationship with the health staffer in your Representative's office, you should ask for that person and explain that the F2F extension provision is included in the Senate-passed bill.

Tell your friends and family to call their Representatives too.  This is going to be a very close vote!

Follow this link - http://thehill.com/homenews/house/85693-whip-watch-the-hills-survey-of-house-dems-positions-on-healthcare - to see a list of Representatives who are undecided.  It is especially important for you to contact these individuals.  If someone on the list is from your state, but not your congressional district, perhaps you can find someone from his/her district to make a call -- a friend, relative, or colleague.  Or, you can call yourself, as a citizen concerned about the future of your state's F2F, and explain that a YES vote will keep federal funds flowing to this important resource for the Representative's constituents who have children with special health care needs. 

Please feel free to call or email me if you have any questions. 

Janis Guerney, Esq.
Public Policy Co-Director
Family Voices
202/546-0558
jguerney@familyvoices.org
www.familyvoices.org

Some of the provisions of health care reform legislation that would help children with special health care needs and their families (effective 2014 unless otherwise noted):   

• Elimination of pre-existing condition exclusions for children (effective six months after enactment of bill). 
• A temporary a high-risk insurance pool for individuals unable to get insurance due to pre-existing conditions. (To be established in 2010.) 
• A requirement to allow dependents to remain on their parents’ health insurance through age 25. (Effective 6 months after the bill’s enactment.)
• Elimination of lifetime benefit caps (effective 2010) and annual benefit caps (effective 2014). 
• Elimination of pre-existing condition exclusions for adults, and prohibition on premium variations based on health status. 
• Expansion of the Medicaid program to cover all individuals in families with incomes under 133% of the federal poverty level. 
• No-cost preventive care and screenings for children, pursuant to the American Academy of Pediatrics “Bright Futures” recommendations.
• Subsidies to lower-income families for premiums and cost-sharing. 
• Limitations on deductibles and co-payments, based on family income.
• Provisions to increase the supply of pediatric subspecialists.
• Incentives for more community-based long-term care in Medicaid.

Editor's Note: The above has been adapted for this posting.

Family Voices of Tennessee, the Vanderbilt Kennedy Center, and Project BRAIN are partnering to host a family conference providing information on an array of topics impacting children with special health care needs and/or disabilities.

Topics Include: 504 health plans, challenging behaviors, HIPAA and health care rights, TBI (Traumatic Brain Injury), transitioning to adult health services, and autism.

• Conference Sessions are Free
• Vendors will be on site throughout the day to share their resources with families.
• Family organizations will be present to offer supports and additional information.
• Confirmed speakers: SCARAB Behavioral Health Services and STEP (Support Training for Exceptional Parents).
• Scholarships may be available for lunch, travel or childcare.
• Box lunches will be $10.00.
• Registration requested by March 12, 2010
  

Download a registration form (PDF)

Download a registration form (MS Word)

Want to set up a vendor or organizational booth? Just give us a call at 1 (888) 643-7811 or drop a line to julie_s@tndisability.org for a vendor registration form.

For more information: contact Family Voices of Tennessee at 1 (888) 643-7811 or by email at julie_s@tndisability.org