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oklahomafamilynetwork.org
Summer 2018 Newsletter

News from the Capitol

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The Oklahoma STABLE Program, offering ABLE (Achieving a Better Life Experience) services to Oklahomans with disabilities, will formally open for business on Thursday, May 31. State Treasurer Ken Miller’s office has partnered with the Ohio State Treasurer’s STABLE Program to empower individuals with disabilities and their families to save, invest and spend money on qualified expenses – without losing needs-based government benefits. The formal launch will occur at 2:00 p.m. on May 31 in the Blue Room of the State Capitol. The public is invited to attend.


Autism Support

Piece Of Mind

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AutismOklahoma’s program, Piece of Mind, will grant life-saving safety equipment to families with one or more children on the autism spectrum whose safety is at risk. Through an application process, qualifying families may receive a GPS tracking system with one year of monitoring. Initial gifts of tracking systems from AngelSense and a financial gift from Groovin’ For Autism will fulfill the first several grant cycles. AutismOklahoma hopes that contributions and grants will allow for expansion into pool alarms and locks.

For more information, and to apply for the grant, click here.


Infant Mental Health

Antidepressants in Pregnancy Tied to Changes in Babies' Brains

ssripregnancy(Reuters Health) - Babies’ brains may develop differently when their mothers take antidepressants during pregnancy, a small U.S. study suggests.

Researchers examined brain scans of 16 newborns whose mothers took medications known as selective serotonin reuptake inhibitors (SSRIs) for depression during pregnancy. They also studied 21 babies whose mothers had untreated depression during pregnancy, and 61 infants born to women without depression.


Click here to read more.


SoonerCare/Healthcare Transition

Neurology in Oklahoma

Brandy and kids 2

Neurology is a scarce commodity in Oklahoma and for SoonerCare members, it can be even more so.  Children under the age of 16 will most likely be put on a waiting list to see a neurologist.  However, after the age of 16 a child can no longer be on the pediatric list. But they also cannot be on the adult list until they are 18. and that waiting list is 6 months long.  I experienced this process with my daughter. She suffers from severe migraines which cause paralysis, and sometimes blindness. Because of these migraines, she has missed a great deal of school, all the while waiting on and needing help from a neurologist.  We were fortunate and didn’t have to wait the full six months. In fact, it was half that amount of time, but many families are not so fortunate. 


By the time she was seen, my daughter was about to age out of SoonerCare. This gave the neurologist precious little time to find the right medications and get them approved. We needed a cost-effective, and migraine-effective, plan that could be maintained by our family.


My daughter turned 19 in February, thereby aging out of SoonerCare. For one of the medications for migraine pain she needed, the doctor gave her samples. We cannot afford it otherwise. She will soon be running out of refills on her other medications.  We had to come up with a plan.


Ministries of Jesus is through our church, Henderson Hills Baptist Church.  It is a wonderful place for the healing of mind, healing of body and healing of spirit.  It is located at 1100 E I-35 Frontage Rd, Edmond OK 73034; 405-340-7400. To be seen for the first time you have to call at 8:00 am on each Monday until you get through. When you do, there is the possibility they have already given away their spots for that day. Be sure to try again the following week. Repeat the cycle until you get confirmation of an appointment.  I was a patient there before I had insurance and my daughter will be as soon as she has done her intake.  They used to have a neurologist on staff, however, he can no longer volunteer. They have other excellent doctors and the ability for neurology services through Mercy charity.


The Isaiah Stone Foundation is another organization trying to bring awareness and help provide for the need of neurologists in our state. It was founded in June 2014, four years after the death of Renzi and LeeAnn Stone’s son Isaiah.  Isaiah was only 11 months old when he died from Sudden Unexpected Death in Epilepsy (SUDEP). In addition to the epilepsy the single biggest contributing factor to his death was the shortage of neurologists in Oklahoma.  Renzi and LeeAnn began the foundation so that no one would have to suffer the way they have.  Edmond Memorial High School’s 2017 Swine Week, their week of philanthropic giving, was dedicated to the Isaiah Stone Foundation in part because they have a few students like my daughter struggling at that time to see a neurologist.  They raised $411,848.  LeeAnn said she would be using it for sleep monitors, to help families with hospitalization, and to help families with child care of their other children.  They are also trying to raise awareness for children in Oklahoma specifically living with neurological disorders with no neurologist…IT’S A BIG PROBLEM!


The Isaiah Stone Foundation is located at 621 North Robinson, Suite 600, OKC OK  73102; 405-570-7282; info@isaiahstonefoundation.com


I feel like this is something we should be calling our legislators about.  We need to be doing something to attract neurologists or encourage students to study neurology then practice here.  People are suffering and dying. Make your voice heard. Here is the link to find your state representatives: http://www.oklegislature.gov/FindMyLegislature.aspx


-- Brandy Tillman, Mother of 3 and SoonerCare Member Advisory Task Force Member


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Our partners value the opinions, experiences, and wisdom of OFN families. The following agencies/organizations have reached out to OFN asking for your feedback. If you can provide any insight or information in the areas listed below, thank you!

Please provide feedback for the NEXT State Prevention Plan. The Oklahoma State Plan (for the Prevention of Child Abuse and Neglect) Surveys are available until May 31 at 5pm.

 

Please share and distribute this email freely with survey links to other advocates, leaders, providers, families, anyone/everyone interested in strengthening families and positive outcomes for children.

 

Please complete the survey that best fits your role:

PROFESSIONAL SURVEY – CLICK HERE  

COMMUNITY SURVEY    – CLICK HERE

 

If you would like to have a paper copy emailed to you, please contact Tiffany Holmes: Email TiffanyH@health.ok.gov; Office Phone 405.271.7611.



Minority Perspective on Health Care

Women of Color, Income, and Healthcare Access

Latoya Alexander

Healthcare can be challenging for women of color.  Some have insurance but are unable to afford their premiums or co-pays due to their level of income. Many of the women I associate with are professional women who do not qualify for Medicaid. Income is an issue when you are just above the poverty line and struggling to even afford a doctor visit. These women of color are ineligible for government assistance yet are experiencing many of the same economic issues as a woman who is eligible for government assistance. They also may not be able to take off work due to their employment commitment.


Women of color are strong-willed women who try their best to overcome the challenges of everyday life. A lot of women of color have more stressors in their life due to lack of access to affordable healthcare and other life obstacles. Many in my circle are first generation college graduates. These women had to work hard for some of the simple things in life that some of their counterparts may take for granted. Women of color, no matter the income, would like affordable and adequate healthcare to maintain their health during pregnancy, after delivery, and for their life span! Access to adequate healthcare prevents health issues and additionally helps women of color focus on becoming healthy, productive women in today's society. A happy, healthy woman is beautiful inside and out!


-- Latoya Alexander, Mother of 2 and SoonerCare Member Advisory Task Force Member


Lifespan Respite Program

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Do you know someone who needs a temporary break from caregiver duties?

The Lifespan Respite Grant Voucher program may be able to help!


Respite service can provide a much-needed, temporary break from the often exhausting challenges faced by family caregivers. Respite vouchers let caregivers hire another person to temporarily care for their loved ones. The Lifespan Respite Grant Voucher program provides respite services for caregivers who do not qualify for other respite programs.


Apply for the Voucher here.



Trauma Informed Care

Military Families and Child Maltreatment

bigstock-Military-family-reunited-on-a-169768235Since 9/11, United States military families have faced historic stresses in conjunction with the deployment of service members to overseas operations. Most military families have coped remarkably well both during and after extended separations and even repeated deployments. Many other military families are still struggling with the effects of uncertainty, change, and loss while serving. Child maltreatment and domestic violence have occurred in some of these families, and more military children who have experienced maltreatment are coming to the attention of behavioral health providers within the military system and in the community.

The 6-page fact sheet Child Maltreatment in Military Families: A Fact Sheet for Providers profiles child maltreatment in military families and presents key concepts, findings, and interventions that will support providers in their care of today’s military family.

Download the fact sheet here.


Get One-on-One Help to Address Your Child's Substance Abuse

partnershipdrugfree 2Sometimes you simply need a one-on-one connection. [Partnership for Drug-Free Kids has] trained and caring master’s-level specialists ready to help any parent struggling with a son or daughter’s drug or alcohol use. They are there to listen, help you find answers and make an action plan.

You can connect with their Helpline specialists in the following ways:

  • Call 1-855-DRUGFREE
  • Live Chat
  • Send an Email
  • Text a Message to 55753

Specialists will listen to your story — the challenges, setbacks, obstacles and myriad emotions that often go along with a child’s substance use. Given that there is no one-size-fits-all approach and each family is unique, they’ll propose a personalized course of action, offering the best tools and resources to help you help your child, yourself and your family.


For details and more information on this program, click here.


Genetics

Why is genetics important to my family and me?

dna

Genetics helps to explain:

  • What makes you unique, or one of a kind
  • Why family members look alike
  • Why some diseases like diabetes or cancer run in families
  • How learning your family health history can help you stay healthy
  • Why you should bring your family health history to your healthcare provider

Taking time to learn about health and diseases that run in your family is worth it! It will help you understand your own health and make healthy choices.


What is a pediatric geneticist?

Pediatric geneticists are trained to identify the causes and natural history of these disorders. They may suggest tests and treatments that can help in understanding and caring for your child’s condition. Pediatric geneticists also can help families understand whether some conditions are hereditary (coming from the genes) and offer testing to family members who may be at risk for having children with similar problems.


What is a genetic counselor?

As members of a healthcare team, genetic counselors provide information and support to families affected by or at risk for a genetic disorder. They serve as a central resource of information about genetic disorders for other healthcare professionals, patients, and the general public.



My NICU Baby App

nicubabyWhile your baby is in the NICU, answers, tools, support and peace of mind are in the palm of your hand with the My NICU Baby(TM) App from March of Dimes. Use My NICU Baby to do things like:
• Get tips and helpful videos to care for your baby in the NICU and at home
• Track breastfeeding sessions and baby’s weight
• Track breast pumping and kangaroo care
• Take photos and add filters
• Connect with other families with similar experiences
• Create a customizable checklist to prepare to take your baby home

March of Dimes is with you through every stage of the pregnancy journey, even when everything doesn’t go according to plan, providing support to all moms and babies when they need it.

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Supporting Parents Wanted

SupportFamily and Professional Partnerships are a big part of OFN.  We are so grateful for the many parents who share their experience with other parents and professionals.

If you would like to be as Supporting Parent, we have several upcoming trainings.  More more information on dates and locations, visit the OFN Website.


Upcoming Events

Oklahoma Family Network Support Parent Training
June 8, 2017
9:00 am
Great Plains Tech Center, Lawton

For more information, contact Terri Kinder at terrik@ofn.mobi


Adoptive Parent Support Group
(Tulsa Area)
Second Thursday of each month

7PM to 8:30PM

Dillon International
7335 South Lewis Ave, Suite 210
Tulsa, OK


For more information, click here.


NAMIWalks 2018 5K Walk

June 2, 2018


Join the NAMI Oklahoma mental health walk to bring awareness, change perceptions about mental illness and raise funds to support NAMI's life changing programs! NAMIWalks check-in and fun begins at 8:30 am


Welcome & Walk 9:30 am

 Myriad Gardens

301 W Reno Ave, Oklahoma City, OK


For more information: 405-601-8283

or click here.




Native Culture and Wellness Camps

The camps will provide enrichment for our urban youth, instilling Native culture in a rich experiential manner. Youth will participate in traditional Indian games, fitness activities, and learn skills for Native arts and crafts.


For more information and to apply, click here.

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Summer Camp List 2018
(This list is for those with disabilities)

May 28-31
Cameron’s Camp of Champs
A residential camp for children ages 6-13 sponsored by Cameron University.

Quartz Mountain State Park
43393 Scissortail Rd
Lone Wolf, Oklahoma, 73655

For more information visit here.

June – Aug
Camp Barnabas
A Christian camp for children, teens, and adults with medical, physical or developmental disabilities and their siblings. Programs offered from June through early August.

Teas Trail Camp
901 Teas Trail
Purdy, Missouri, 65734

For more information visit here. Or call (417) 708-5298

June - July
Camp ClapHans
A camp for children ages 8-16 with special needs, an outreach project of the JD McCarty Center for Children with developmental disabilities.Waiting List

2002 E Robinson St.
Norman, Oklahoma, 73071

For more information visit here or call (405) 307 2865

May 31-June 2
Camp Perfect Wings
A camp for children (ages 8 and up) and adults with special needs sponsored by the Baptist General Conven-tion of Oklahoma.

Cross Timbers
5039 State Highway 77S
Davis, Oklahoma, 73030

For more Information visit here.

June - Aug
Camp Tumbleweed
A camp for teenagers and young adults with disabilities.

Dale Rogers Training Center (Main Campus)
Session I: June 4-29;
Session II: July 9-27, July 9-August 10

2501 N Utah Ave
Oklahoma City, Oklahoma, 73107

For more information visit here or call (405) 946-4489


April - Dec
MPH (Make Promises Happen) Camp and Events
MPH hosts camps, retreats, and events for children and adults with disabilities throughout the year.

Camp Tanglewood
1 Twin Cedar Ln
Guthrie, Oklahoma, 73044

For more information, visit here.


June– July
Oklahomans Without Limits (OWL)
Free camps for youth with visual impairments and blindness

Tulsa Camp, (ages 15-18),
Lake Tenkiller, June 29– July 2
OKC Camp, (ages 8-14),
YMCA Camp Classen, July 15– July 21

For more information visit here.

June - July
Camp CANOE (Children with Autism Need Outdoor Experience)
Camp for children with high-functioning autism (K-12)

Camp DaKaNi, OKC

For more information, contact Penn Henthorn at (405) 254-2080 or visit here.

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