support, education and training
Parent to Parent and Care Collaboration Network

contacts for ordering
Parent to Parent of Virginia
P.O. Box 38341
Richmond, Virginia 23231

804-828-0352

Dana Yarbrough
ptpofva@aol.com

Norma Draper
ndraper17@aol.com

Cynthia Lantz
cvlantz@hotmail.com

Dana Yarbrough, Executive Director

Norma Draper, Care Connection Collaboration South Central Virginia Trainer and Consumer- Services Resource Network Trainer

Cynthia Lantz, Care Connection Collaboration Central Virginia Trainer

Full list of State Resources, also found in Chapter 10 of the Care Coordination Notebook Care Coordination Notebook: Financing your Child's Health Care (2005) Download (2.6 MB) requires Adobe Acrobat TO ORDER Hard Copy (ALSO in Spanish)

Bright Futures (804) 864-7689
www.brightfutures.org (national), www.vahealth.org/brightfutures

Bright Futures is a national health promotion initiative dedicated to the principle that every child deserves to be healthy and that optimal health involves a trusting relationship between the health professional, the child, the family, and the community as partners in health practice.

Care Connection for Children (CCC)
www.vahealth.org/specialchildren/cssprogram
Care Connection for Children is a statewide network of Centers of Excellence for children with special health care needs (CSHCN) sponsored by the Virginia Department of Health. Care Connection services include:

• Access to specialty medical care and Medical Homes
• Assistance coordinating care and services
• Assistance in obtaining health insurance for the child
• Information and referral to community resources
  

Family to family support
Children are eligible to receive Care Connection services if they are residents of Virginia under the age of 21, and have a chronic physical condition that requires health care and other services beyond that which is needed by children generally.

Services are free of charge. Each of the six CCC centers serves a large geographic area. Toll free numbers are below:
Blue Ridge (866) 596-9367
Central Virginia (866) 737-5965
Hampton Roads (800) 864-8903
Northern Virginia (866) 222-0372
Roanoke Area (866) 906-2999
Southwest Virginia (800) 704-1285

Care Connection for Children Resource Directory
www.specialneedsresourcesva.org

Centers for Independent Living (CIL)
www.vadrs.org/cbgs/cils
CILs are non-profit organizations that provide services to persons with significant disabilities to maximize their independence. Services include information and referral, independent living skills training, and advocacy training. They also provide information and technical assistance to the
community. CILS are non-residential places. There are 16 CILs in Virginia.

Child Development Services
www.vahealth.org/specialchildren/cdsprogram
The Child Development Services (CDS) program is a statewide network of clinics sponsored by the Virginia Department of Health. The clinics serve children and adolescents suspected of having developmental and behavioral disorders. The clinic team consists of a pediatrician, nurse, social worker, educational consultant, and psychologist. Medical consultations are also
available from other pediatric specialists. Services include diagnostic assessment and care planning, care coordination and referral. Each CDS clinic serves a large geographic area:

Connect for Kids www.connectforkids.org
An alternative news website that provides information and advocacy tools for families to address state and national issues regarding children. Connect for Kids helps adults make their communities better places for families and children. The site includes a “Yellow Pages for Kids with Disabilities”
and chat rooms.

Council for Exceptional Children (CEC), (703) 620-3660
www.cec.sped.org
The Council for Exceptional Children is the largest international professional organization dedicated to improving educational outcomes for students with disabilities and/or the gifted. CEC sets professional standards, provides professional development and advocates for appropriate governmental policies. An excellent resource for information on the IDEIA.

Court Appointed Special Advocate Program (CASA), (804) 786-4000
www.dcjs.virginia.gov/juvenile/casa
CASA is a child advocacy program that assigns trained volunteers to speak for abused and neglected children in the juvenile justice system. There are over 25 local CASA programs.

Easter Seals, (800) 365-1656, http://va.easterseals.com
Easter Seals Virginia provides programs, services, consultation, advocacy and education for children and adults with disabilities, their families and their communities.

Family Involvement Project (FIP), (888) 604-2677, www.arcfip.org
The Family Involvement Project is a program of the Arc of Virginia. FIP works to assure that Virginia’s Infant and Toddler Connection program is of the highest quality.

The project focuses on strengthening family involvement with local interagency coordinating councils, ensuring parent to parent support for families receiving early intervention services; and working to
recruit and train parents to serve on state early intervention review teams

Family Voices, (804) 264-8428 (VA chapter), www.familyvoices.org
Family Voices is a national grassroots network of families and friends that advocates for health care services for children and youth with special health care needs. Family Voices promotes inclusion of families as decision-makers at all levels of health care and supports essential partnerships
between families and professionals.

National Dissemination Center for Children with Disabilities
(800) 695-0285, www.nichcy.org
NICHCY is funded by the federal Office of Special Education Programs of the
Department of Education to connect families to needed resources for infants, toddlers, children and youth who have disabilities.

All information through NICHCY is available in both English and Spanish.

National Organization for Rare Disorders (NORD)
(203) 744-0100 or (800) 999-6673 (voice mail only)
www.rarediseases.org
NORD is a non-profit health organization dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD provides information, education, referrals, advocacy, research grants and Medication Assistance Programs.

Parents and Children Coping Together (PACCT)
(800) 477-0946 (toll free within Virginia), www.pacct.net
PACCT is a statewide organization for families of children and adolescents with mental, emotional and behavioral disorders. PACCT exists to develop and maintain local family support groups and a network
for advocacy.

Parent to Parent of Virginia (PTPofVA), (804) 828-0352
www.ptpfofva.com
PTPofVA, Virginia’s state Parent to Parent office, supports families with children with disabilities and service providers across the Commonwealth with best practice in family support. PTPofVA provides training,
technical assistance and advocacy support.

Parent Training & Information Center, (800) 869-6782
www.peatc.org
The Parent Educational Advocacy Training Center (PEATC) assists families of children with disabilities through education, information
and training. PEATC builds parentprofessional partnerships to promote success in school and community life.

Legal Services
Legal Advocacy Center, (804) 967-2556, www.virginialac.org
The Legal Advocacy Center is a non-profit organization that supports legal services that will protect and advance the rights of students with disabilities in Virginia. The Center partners with the Virginia Coalition
for Students with Disabilities.

Virginia Poverty Law Center (VPLC), (800) 868-8752
www.vplc.org
The Virginia Poverty Law Center is a nonprofit organization concentrating in areas of law that affect low-income families. VPLC provides training to local legal aid programs, attorneys, and low-income clients, relating to the legal rights of Virginians living in poverty. The website includes a legal
services directory for Virginia.

Legal Aid, (866) 534-5243, www.valegalaid.org

Respite Resource Project (RRP), (804) 828-8587
www.vcu.edu/partnership
The RRP supports the development of respite services to meet the needs of families of children with disabilities. Activities include technical assistance and the provision of resource information, including the
summer camp guide.

Special Needs Advocate for Parents (SNAP), (888) 310-9889
http://www.icdri.org/Children%20%20and%20Parent%20Resources/special_needs_advocate_for_paren.htm
SNAP offers a number of services (medical insurance assistance, resources, newsletter, special needs estate planning) to parents who have children with special needs to help them make important decisions in planning for their child’s well-being as well as to provide information, resources and
networking opportunities.

Special Needs Assistance Program for Children (SNAP4Kids)
(757) 440-5254, www.snap4kids.org
Assists families through information, referral and education. Provides modest grants for medical and therapeutic equipment not covered by insurance.

Specialized Training of Military Parents (STOMP)
(800) 572-7368 (5-PARENT), www.stompproject.com
Parent training and information center established to help military families who have children with special education or health care needs.

University Center for Excellence in Developmental Disabilities
(804) 828-3876, www.vcu.edu/partnership
The Partnership for People with Disabilities operates more than 20 federal
and state programs supporting individuals with disabilities and families.

Women, Infants and Children Program (WIC)
(888) 942-3663 (WIC-FOOD), www.vahealth.org/wic
The WIC program is a suppplemental nutrition program funded by the U.S. Department of Agriculture. WIC provides high-quality food to pregnant and lactating women and children up to the age of five. It is operated through local health departments and mobile clinics throughout Virginia.

Virginia State Agencies

Assistive Technology Virginia Assistive Technology System and Loan Fund Authority, (804) 662-9993, www.vats.org

Children with Special Health Care Needs Virginia Department of Health
(804) 864-7706, www.vahealth.org/specialchildren

Developmental Disabilities Virginia Board for People with Disabilities
(800) 846-4464, www.vaboard.org

Health Insurance (Commercial) Virginia State Corporation Commission, Bureau of Insurance, (800) 552-7945
www.state.va.us/scc/division.boi

Hearing Impaired Virginia Department for the Deaf and Hard of Hearing
(800) 552-7917, www.vddhh.org

Infant & Toddler Connection of Virginia Virginia Department of Mental health, Mental Retardation and Substance Abuse Services
(804) 786-3710, www.infantva.org

Medicaid (includes FAMIS Plus and FAMIS) Virginia Department of Medical Assistance Services
(804) 786-4231, www.dmas.virginia.gov

Protection and Advocacy Virginia Office for Protection and Advocacy
(800) 552-3962, www.vopa.state.va.us

Rehabilitative Services Virginia Department of Rehabilitative Services
(800) 552-5019, www.vadrs.org

Social Services Virginia Department of Social Services
(804) 692-1900, www.dss.state.va.us

Special Education Virginia Department of Education
(800) 292-3820, www.pen.k12.va.us

Visually Impaired Virginia Department for the Blind and Vision Impaired
(804) 371-3140, www.vdbvi.org

Disability Specific Organizations

ADD/ADHD
Children and Adults with ADD/ADHD
(800) 233-4050, www.chadd.org
CHADD works to improve the lives of people affected by AD/HD through leadership, advocacy, research, education, and support.

Autism
Commonwealth Autism Services, (800) 649-8481
www.autismva.org
Provides leadership in the implementation of a statewide system of services to maximize the potential and quality of life of Virginians with autism.

Virginia Autism Resource Center (VARC)
(877) 667-7771 or (804) 674-8888, x 5161
www.grafton.org
The VARC is a program of Grafton. It provides training, individual case consultation, and information to families and professionals working with individuals with autism in Virginia.

Brain Injury
Brain Injury Association of Virginia, (800) 334-8443
www.biav.net
Provides current, practical information for professionals, persons with brain injury, and family members.

Cerebral Palsy
United Cerebral Palsy of Southern/Central VA, (757) 497-7474

United Cerebral Palsy of Washington DC/Northern VA, (202) 269-1500
www.ucpa.org
UCP is the leading source of information on cerebral palsy and is a leader in advocating for the rights of persons with disabilities.

Chromosome Disorders
Chromosome Deletion Outreach
(561) 395-4252, www.chromodisorder.org
Provides support to parents of children born with rare chromosome disorders. Provides information and promotes research and community
understanding of these disorders.

Cystic Fibrosis
Cystic Fibrosis Foundation (CFF), (800) 344-4823 or (804) 527-1500
www.cff.org
The Foundation’s mission is to assure the development of the means to cure and control cystic fibrosis, and to improve the quality of life for those with the disease. The CFF provides education, information, supports specialty care centers, funds research and operates a specialty pharmacy.

Down Syndrome
National Down Syndrome Society (NDSS)
(800) 320-4514, www.ndss.org
The mission of the NDSS is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. Through NDSS, you can locate regional Down Syndrome Associations in the greater Richmond, Hampton Roads, Northern Virginia and Roanoke areas.

Epilepsy
Epilepsy Foundation of Virginia (EFVA), (800) 332-1000 or (434) 924-8669
www.efva.org
Promotes awareness about epilepsy, provides assistance to those with the disorder, and provides training for professionals and families.

Fragile X
National Fragile X Association, (800) 688-8765
www.fraxa.org
Supports research aimed at treatment for Fragile X Syndrome.

Hearing Impairments
A. Graham Bell Association, (202) 337-5220
www.agbell.org
AG Bell promotes its mission: Advocating Independence through Listening and Talking!

Learning Disabilities
Learning Disabilities Association of Virginia
(804) 745-9325, www.ldavirginia.org
Focuses on enhancing educational and vocational services for individuals with
learning disabilities who live in Virginia.

Mental Retardation and Development Disabilities
The Arc of Virginia, (804) 649-8481, www.arcofva.org
Advocates to focus attention on the needs of individuals who have intellectual disabilities and related developmental disabilities.

Speech
Speech-Hearing-Language Association of Virginia
(800) 487-4637. www.shav.org
SHAV is a nonprofit organization of professionals working to meet the needs of people with communication impairments in Virginia.

Spina Bifida
Spinda Bifida Association of America (SBAA)
(800) 621-3141 or (202) 944-3285, www.spinabifidaassociation.org
The SBAA serves adults and children who live with the birth defect of spina bifida. The association uses education, advocacy, research and service to promote the prevention of spina bifida and enhance the lives of all affected. Contact SBAA for information on regional Spina Bifida Associations in the Roanoke Valley and Hampton Roads areas.

Visual Impairments
American Foundation for the Blind (AFB)–Southeast
(404) 525-2303, www.afb.org
AFB advocates to ensure that people who are blind or visually impaired enjoy the same rights and opportunities as other citizens.