Nurse Helping Girl

West Virginia Parent Training and Information, Inc. are the Family Voices State Affiliate Organization for National Family Voices.  Family Voices-WV, affiliated with National Family Voices, works to "keep families at the center of children's healthcare."

Who are CYSHCN?

 

Families may have some issues of concern to receiving assistance for child's health needs. Some typical questions asked are:

 

  • What are the eligibility requirements for Medicaid? How do I apply?
  • What is Title V and what programs do they have for children?
  • Medicaid has denied me a payment of my child's services. What do I do now?

 

Family in Hall

What does CYSHCN mean?

       This term "children and youth with special health care needs"  includes children and youth with a broad range of chronic health conditions- from major physical and developmental disabilities to attention deficit disorder and asthma. 

 

Boy in Wheelchair

WVPTI, Inc. as the Family Voices State Affiliate supports families...

  • Family-centered support. The families' wants and needs are valued.  Information is distributed to each child and family.
  • Partnerships. Relationships are built on trust and respect for each other. WVPTI is there to give guidance to families in need to find support groups and resources. 
  • Information on specific disabilities and issuesFamilies with children with special needs need to the latest information about certain specific conditions and disabilities.
  • Health systems that work for families and children. The doctors and hospitals make sure that their policies are appropriate for families. Care should be delivered in a way that makes all families feel comfortable. Everyone receives quality care no matter what.
  • Informed families/strong communities. Families who have the knowledge to help their child are better at making sure their child grows up happy and healthy in their own neighborhood.
  • Self-advocacy/empowerment. When given good information and support, young people with disabilities can make choices and advocate for themselves.

 

Families Focus

WVPTI, Inc. understands that families need support, information, resources, and training to families of children and youth with special health care needs and the professionals who serve them. WVPTI is staffed by family members who have firsthand experience navigating the maze of health care services and programs, making them uniquely qualified to understand the issues that families face and to help families partner with professionals and make informed decisions. Navigating the system of care can be confusing at times for families. Often it is left to parents to figure out needs, which agencies can meet those needs, what and where it is available.

Bedside Manner

 

WVPTI promotes family and professional partnerships. Family involvement is vital to the care of children and youth with special health care needs. While professionals can provide support and expertise, families possess their own unique knowledge about their children.

WVPTI, Inc. Activities:

  • provide information, education, training, support and referral services;
  • reach out to underserved/underrepresented populations;
  • collaborate with family groups and professionals in efforts to improve education and/or services for children with special health care needs. 

Family Hugging

We Offer:

  • Emotional support from parents and families. We focus on connecting families to parent support groups for networking and sharing information experiences;
  • Leadership and self-advocacy training opportunities;
  • Train parents, families and young adults in the process of transition by our transition workshops.

For more information or assistance, please contact our central office in Buckhannon, WV. 

WV Parent Training and Information,Inc. 
99 Edmiston Way
Buckhannon, West Virginia 26201

E:  wvpti@aol.com
P: 304.472.5697
T: 800.281.1436 (WV)
F: 304.472.3548

 

 

 


Contact Form

We'd like to hear from you. Please send us any questions or comments you have for us by using the form below:





Family Information Resources

Woman Hugging Girl

Family Leadership

Family Leadership

The WV Family Voices supports families as partners in the health-related services to children and youth with special health child needs. Family-centered care is highly important with improving the quality of health care. It is important for providers to understand the needs of all families including the underserved areas.

Tip Sheets from Family Voices:

Health Insurance

Health Insurance

There are a variety of options when you are looking for health insurance. Some of the options are Medicaid, Health Kids, Children’s Special Health Care Services (CSHCS).

Medicaid: This insurance is funded by Federal and State to assist children, aged, blind and/or disabled people. The link is:

Medicaid

CHIP: The West Virginia Children’s Health Insurance Program will provide free health insurance for children under the age of 18 who have no other insurance. Call 1-877-982-2447 if you need to talk with someone about this program. The online address is:

CHIP

Other insurance such as Medicaid Waivers, Supplemental Security Income (SSI), Under 21, High Deductible Health Plans are options to explore.

If you want to explore West Virginia Health Insurance, please visit:

WV Health Insurance

Medical Family Options

Medical Family Options

Locating a medical facility near where you live:

Hospital location site

Locating a provider in WV:

Providers listed by county with PEIA

Family Doctors Near Charleston

Family Doctors Near Morgantown

Doctors at WVUMedicine  (When you are completing your search, place Morgantown in the location bar.)

Find a doctor at St. Mary's Medical Center

Find a doctor at Wheeling Hospital

Locating hospitals outside of WV:

Children's Hospital of Pittsburgh

Cincinnati Children's Hospital

Kennedy Krieger Institute at John Hopkins Children's Center

Early screening information for your young child, contact:

WV Birth to Three

 

 

Stories from Our Families

Stories from Our Families

 

 

 

Aurora is a very happy, inquisitive child who just celebrated her 7th birthday. She is looking forward to starting her 2nd-grade year beginning this August.  She and her family are happy to celebrate two and a half years of seizure free. Aurora had her first seizure when she was six years old. Sometimes, the seizure activity would be associated with a fever or illness. Other times, it would not. After years of testing and documenting seizure activity, her neurologist officially diagnosed Aurora with epilepsy after a 15-minute long seizure and began treatment. 

Aurora began preschool shortly after she turned four years old. It was rather evident Aurora had speech delays and was in need of speech therapy. There was concern regarding Aurora's fine motor skills. Aurora began to participant in occupational therapy. During the initial IEP meeting, the question came up about Aurora's medical card which we did not have. Then, it was decided to see if Aurora would acquire the speech and motor skills with age and practice. At present, her speech delays would interfere with her social activity according to the teacher's reports. The teacher documented that Aurora would seclude herself from group activities. She would play along side of her classmates but she would never play with them. Aurora was very socially inhibited during class play or discussion, which is believed to be correlated with her speech impairments. This was a noted battle as the speech pathologist expressed they had never been unsuccessful until my daughter in getting a child to master the C, K, and G sounds. 

In first grade, Aurora was constantly getting negative remarks on her writing. On assignments, she was only getting a small portion completed and submitted compared to the other students because of her need for occupational therapy. Following a consultation with the WVPTI Trainer, I had submitted a letter to the teacher and the principal requesting a SAT meeting. During the SAT meeting, we did explore the potential for occupational therapy services. It was determined Aurora's neurologist write a prescription for this service to get approval through the Board of Education. After a lengthy process of fighting for Aurora, we were able to get the needed services to address her speech and fine motor skills needs. Aurora continues to thrive and is doing better every day She is learning to tie her shoes and has been successful in buttoning her own garments. 

I dream of Aurora with a future of continued happiness and learning. She has expressed during Summer Academy of her aspirations of being a teacher when she grows up. I hope that she continues to dream big and follow her dreams and these dreams include higher education. 

My advice to other families is to never give up and to learn what your rights are as a parent, and what your child's rights are as a student. As quoted by Julie Andrews, "Perseverance is failing 19 times and succeeding the 20th." 

WVPTI has been a wonderful resource during this process. They were able to educate me on the IEP process, as well as my rights within the process. Through a parent support group convened by our region's trainer, I was able to gain peer support and better recognize the challenges and obstacles that still await us to allow me to prepare. The medical diagnosis and having an IEP to give Aurora what she needed has offered her a brighter future. With WV PTI's assistance, I was able to learn key skills, including documentation which assisted me during the struggles. My family is very appreciative of all the wonderful support WVPTI has been able to offer.

Submitted by Jessica, a parent 

 

  My name is Crystal and this is my daughter, Katelyn. She is almost four years old. We are residents of Taylor County. As she was developing, we noticed something was not quite right. When trying to get Katelyn into early preschool, she was first denied according to her evaluations. I was able to get her a second opinion. Then, she was diagnosed with ADHD and Autism. From there, we enrolled her into school with an IEP. Also, we went to see a vision specialist where she was diagnosed with Cortical Visual Impairment. After revising her IEP, I noticed her needs were not being met in school. By the end of the school year, my daughter's IEP plan was not being followed as promised. I was discouraged and disheartened. I wondered why my daughter wasn't getting the help that she needed. Then, a friend invited me to a WVPTI training with Mrs. Pat Elliott. I was so grateful because I learned so much and how I am the voice for my child. I asked Pat to help be my advocate and assist me. I am so grateful for her and her help in making sure the accommodations are being completed for my child to give her the best education possible! I can't wait to see what the future holds for Katelyn!

Submitted by Crystal, a parent

 

Training & Fact Sheets

Training & Fact Sheets

Evaluation of Resources

Evaluation of Resources

You will find there are a variety and numerous amount of information on the web for families who have children or youth with disabilities or special health care needs. Here is a tool to help you decide if the quality of information is worthwhile and trustworthy to use:

Trust or Trash