Medical Home Plus’ Resource Hub

Offering you the latest information and resources from across the internet.

Family Resource Center: Special Needs Essentials Section

Section A: UNDERSTANDING SPECIAL HEALTH CARE NEEDS

Children with Special Health Care Needs

The Children with Special Health Care Needs (CSHCN) Program promotes the optimal health and development of Virginia’s children with special health care needs by working in partnership with families, service providers, and communities.

Center for Parent Information and Resources
The Center for Parent Information and Resources (CPIR) provides a wealth of general information about special health care needs, including definitions of disabilities which may qualify for special education and a 13-page guide to over 90 national disability organizations.

Section B: SCREENING FOR SPECIAL HEALTH CARE NEEDS

Care Connection for Children

Care Connection for Children (CCC) is a statewide network that provides health care services, community support and resources to children with special health care needs and their families. Among many other services, they offer family to family support.

Infant and Toddler Connection of Virginia
The Infant and Toddler Connection of Virginia provides referrals to the “central point of entry” for services for children with special health care needs in each locality.

Virginia Chapter of American Academy of Pediatrics
The Virginia Chapter of American Academy of Pediatrics’ mission is the attainment of optimal health, safety, and well-being for Virginia’s children and promotion of pediatricians as the best qualified of all health professionals to provide child health care.

Virginia Child Development Services Program
The Virginia Child Development Services Program has a local team of medical and educational specialists can provide assessment, care planning, care coordination and referral help, available through 11 offices across Virginia.

Virginia Community Service Boards and Behavioral Health Authorities
These are the local government agencies which serve as the “single point of entry” for services for individuals with mental health, mental retardation or substance abuse disorders.

Virginia Comprehensive Services Act for At Risk Youth and Families
A Virginia program that can pay for comprehensive services for children and youth with serious emotional problems through the Family Assessment and Planning Team (FAPT) process.

Virginia Pediatric Screening and Genetics Service
This program focuses on reducing and preventing disabilities and death resulting from disorders detectable through newborn screening, diagnosis, and treatment, and assuring availability of follow-up genetic services for families at risk.

Section C: FINDING RELIABLE INFORMATION

Campbell Collaboration
Education research that has been reviewed by experts.

Center for Evidence-Based Practices
Research on effective intervention procedures to help children with special needs who have challenging behaviors.

Clinical Trials.gov
Authoritative, evidence-based research on effectiveness of treatments for people with disabilities, among other conditions.

Council for Exceptional Children
An organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

Medline Plus
Comprehensive online resources for healthcare information in an easily searchable format on over 700 health topics with over 165 online tutorials.

Merck Manual Online
Searchable online database of authoritative, concise information on diagnosis and treatment of medical conditions.

National Library of Medicine
Gateway to a vast array of authoritative health care information.

PubMed
One of the most comprehensive online directories providing access to authoritative information on medical conditions, treatment options and evidence-based research. 

U.S. Department of Education

The U.S. Department of Education offers the What Works Clearinghouse, an authoritative source of scientific evidence on what works in education.

Section D: PARENT AND FAMILY SUPPORT ORGANIZATIONS

The Arc of Virginia
The Arc of Virginia advocates and speaks out on issues that affect people with intellectual and related developmental disabilities and their families. They help people with disabilities, family members, friends, and others become advocates themselves.

Family Voices
A national grassroots network of families and friends that advocates for health care services for children with special needs, offering several publications on how to advocate on behalf of your child.

Parent Educational Advocacy Training Center
The Parent Educational Advocacy Training Center (PEATC) provides information and assistance to families in understanding and negotiating the special education and disability service systems, and training to enhance collaboration between parents and professionals.

Parent to Parent of Virginia
A network of parent volunteers who provide families of children with special needs with emotional support, coping skills and a model of positive family integration, as well as information about services and support programs. 

Family Resource Center: Laws and Regulations

Resources

Brownley Law Group
Access to seminars, advocates and legal counsel that can help you prepare for and navigate the IEP process.

Center for Parent Information and Resources
The Center for Parent Information and Resources (CPIR) provides a wealth of general information about special health care needs, including definitions of disabilities which may qualify for special education and a 13-page guide to over 90 national disability organizations.

Center for Special Education Advocacy
This organization provides free downloadable publications and fee-based training on disability law topics for parents as well as professionals, and referrals to attorneys who specialize in Virginia disability and special education law.

Commonwealth Community Trust
This organization administers affordable and efficient third party Special Needs and self-funded Pooled Disability Trusts for people with disabilities. Its staff members are knowledgeable about rules governing trusts for clients receiving Supplemental Security Income (SSI) and Medicaid in order to preserve these benefits.

Council for Exceptional Children
The CEC provides Information on the No Child Left Behind Act of 2001: Implications for Special Education Policy and Practice and many other special education resources. The Policy and Advocacy section of this website includes information on recent legislative developments.

Disability Law Center of Virginia
Through zealous and effective advocacy and legal representation, the DLCV aims to protect and advance legal, human, and civil rights of persons with disabilities; combat and prevent abuse, neglect, and discrimination; and promote independence, choice, and self-determination by persons with disabilities.

Disability Rights Education and Defense Fund
Information on disability rights laws including ADA, Section 504 and IDEA, as well as topics such as access to care and special education. 

National Council on Disability
An independent federal agency which promotes policies, programs and policies to enhance quality of life for Americans with disabilities. Recent publications available through this website cover reasonable accommodation, empowerment, ADA best practices, and emergency preparedness among other topics. 

Office of Special Education and Rehabilitative Services
Information on IDEA 2004 provided by the U.S Department of Education.

Parent Educational Advocacy Training Center
The Parent Educational Advocacy Training Center (PEATC) provides information and assistance to families in understanding and negotiating the special education and disability service systems, and training to enhance collaboration between parents and professionals.

Technical Assistance Alliance for Parent Centers
Links to a broad range of resources on building more effective collaboration between parents and education professionals and a number of excellent resources on the IDEA. 

University of Richmond: National Center for Family Law
The NCFL is committed to serving the best interests of families and children through academic and service programs that enhance the quality of the American legal system in matters relating to families and children.

U.S. Department of Education: No Child Left Behind
The official No Child Left Behind website, where you can download the No Child Left Behind Parent’s Guide.

U.S. Department of Justice: Americans with Disabilities Act
The ADA Home Page is an official source for information on the ADA, including design standards, technical assistance, mediation and enforcement. 

Virginia Poverty Law Center
Nonprofit organization which provides support and training to low-income clients relating to legal rights of Virginians living in poverty.

Wrightslaw: Section 504 and ADA
Extensive information on Section 504 and its impact on children with special needs. 

Wrightslaw: IDEA 2004
A wealth of information about IDEA and related special education issues.

Wrightslaw: No Child Left Behind
A wealth of information on NCLB and how it impacts children and youth with special health care needs. 

Wrightslaw
A wealth of information on topics such as managing behavioral issues, responding to crises at school, and other legal matters of interest to families with children with special needs

Family Resource Center: Planning Your Child's Care, Education and Future Section

Section A: EDUCATIONAL PLANNING

Center for Effective Collaboration and Practice

Information on emotional and behavioral problems with focus on ideas that work in education, functional assessment, early intervention and other topic areas

Center for Parent Information and Resources
The Center for Parent Information and Resources (CPIR) provides a wealth of general information about special health care needs, including definitions of disabilities which may qualify for special education and a 13-page guide to over 90 national disability organizations.

Council for Exceptional Children
The CEC provides Information on the No Child Left Behind Act of 2001: Implications for Special Education Policy and Practice and many other special education resources. The Policy and Advocacy section of this website includes information on recent legislative developments.

Disability Rights Education and Defense Fund
Information on disability rights laws including ADA, Section 504 and IDEA, as well as topics such as access to care and special education. 

Great Schools
Great Schools is the leading national nonprofit empowering parents to unlock educational opportunities for their children. It provides school information and parenting resources to help millions of American families choose the right school, support learning at home, and guide their children to great futures.

Independent Life Resources

Maintained by a special education professional, this website includes an extensive directory of online resources covering 20 categories, including special education.

Institute of Community Integration, University of Minnesota
This website offers a wide range of fee-based products and services, including evaluation services and training on inclusive education and other special education topics.

Kids Together, Inc

Kids Together is a nonprofit organization providing information for children and adults with disabilities, including information on IEPs, assistive technology and other special ed topics.

PACER Center
PACER Center enhances the quality of life and expands opportunities for children, youth, and young adults with all disabilities and their families so each person can reach his or her highest potential. PACER operates on the principles of parents helping parents, supporting families, promoting a safe environment for all children, and working in collaboration with others.

Parent Educational Advocacy Training Center
The Parent Educational Advocacy Training Center (PEATC) provides information and assistance to families in understanding and negotiating the special education and disability service systems, and training to enhance collaboration between parents and professionals.

Public Education NetworkFree downloadable publications on a wide variety of special education topics, links to a well-organized range of special-ed related organizations, information on training events.

School Counseling Group
Helps parents identify and evaluate schools, programs and other resources to address special needs, including day school, boarding school, crisis intervention, college guidance, mentoring, and testing referrals.

SchwabLearning
A Parent’s Guide to Learning Differences, covering identifying difficulties, managing your child, managing school and learning, resources and publications.

Special Ed Connection
Fee-based online information site (a free trial is available) with information on laws and regulations impacting special education, as well as information on challenging behavior and specific disabilities among other topics.

Waisman Center
The Waisman Center is dedicated to advancing knowledge about human development, developmental disabilities, and neurodegenerative disease.

Wrightslaw: Section 504 and ADA
Extensive information on Section 504 and its impact on children with special needs. 

Wrightslaw: IDEA 2004
A wealth of information about IDEA and related special education issues.

Wrightslaw: No Child Left Behind
A wealth of information on NCLB and how it impacts children and youth with special health care needs. 

Wrightslaw
A wealth of information on topics such as managing behavioral issues, responding to crises at school, and other legal matters of interest to families with children with special needs.

Section B: CARE PLANNING AND COORDINATION

Care Connection for Children
Care Connection for Children (CCC) is a statewide network that provides health care services, community support and resources to children with special health care needs and their families. Among many other services, they offer family to family support.

Children’s Hospitals and Clinics of Minnesota
hildren’s Online Medical Organizer, a free online medical record system that lets you set up a personal website to centrally store critical information about your child with special needs.

National Center for Medical Home Implementation

The National Center for Medical Home Implementation (National Center) is focused on ensuring all children and youth — particularly those with special health care needs — have access to a medical home.

Parent Educational Advocacy Training Center
The Parent Educational Advocacy Training Center (PEATC) provides information and assistance to families in understanding and negotiating the special education and disability service systems, and training to enhance collaboration between parents and professionals.

Technical Assistance Alliance for Parent Centers
Links to a broad range of resources on building more effective collaboration between parents and education professionals and a number of excellent resources on the IDEA. 

Virginia Community Service Boards and Behavioral Health Authorities
These are the local government agencies which serve as the “single point of entry” for services for individuals with mental health, mental retardation or substance abuse disorders.

Virginia Comprehensive Services Act for At Risk Youth and Families
A Virginia program that can pay for comprehensive services for children and youth with serious emotional problems through the Family Assessment and Planning Team (FAPT) process.

Virginia Department for Aging and Rehabilitative Services 

VDARS provides and advocates for the highest quality of services to help those with disabilities to maximize and secure their employment, independence and full inclusion into society.

Section C: TRANSITION PLANNING

Association on Higher Education and Disability

The Association on Higher Education and Disability (AHEAD) offers a wide range of publications and resource references on postsecondary education opportunities for people with disabilities.

Center for Parent Information and Resources
The Center for Parent Information and Resources (CPIR) provides a wealth of general information about special health care needs, including definitions of disabilities which may qualify for special education and a 13-page guide to over 90 national disability organizations.
 

Council for Exceptional Children
An organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.
 

The ENDependence Center of Northern Virginia (ECNV)

ECNV is a community-based resource center for people with disabilities, offering peer counseling, advocacy, independent living skills training, referral services and support groups.

Institute of Community Integration

This website offers a wide range of fee-based products and services, including transition planning services and training materials on transition and career preparation and self-advocacy.

Minnesota Governor’s Council on Developmental Disabilities

A variety of presentations and over 10,000 pages of downloadable information on independence, self determination, integration and inclusion for people with developmental disabilities.

National Collaborative on Workforce and Disability

This website is a resource for youth with disabilities, including information on programs available to help youth develop and implement an effective strategy for finding employment that meets their needs and interests

Parent Educational Advocacy Training Center
The Parent Educational Advocacy Training Center (PEATC) provides information and assistance to families in understanding and negotiating the special education and disability service systems, and training to enhance collaboration between parents and professionals.

Transition Coalition 
The Transition Coalition, located at the University of Kansas, Beach Center on Disability, has been maximizing professional development opportunities for secondary transition and college and career readiness of youth with disabilities.

Virginia Board for People with Disabilities

Promotes maximum independence, productivity, family support and community participation for people with disabilities.

Virginia Department for Aging and Rehabilitative Services 
VDARS provides and advocates for the highest quality of services to help those with disabilities to maximize and secure their employment, independence and full inclusion into society.

Virginia Statewide Independent Living Council
VASILC promotes policies, programs and activities to maximize independence of people with disabilities. The council offers independent living skills training for Virginia’s disabled population through 16 centers across the state.
 

The Youthhood
The Youthhood is an excellent website resource designed to help youth with disabilities plan their future

Family Resource Center: Financing Your Child's Needs Section

Resources

Care Connection for Children

In addition to its other services, CCC offers assistance to families in obtaining health insurance for their child, and administers a pool of funds that can assist qualified families who are uninsured.

Commonwealth Community Trust

Nonprofit organization that provides Virginia residents with an economical way to set up Special Needs Trusts to provide for the lifelong needs of people with disabilities without jeopardizing their public benefits

National Health Law Program

This organization provides online information on disability rights and Medicaid.

Parent to Parent of Virginia

All of the staff of Parent to Parent of Virginia have family members with disabilities. We understand the day-to-day struggles with being a parent or grandparent and have dedicated our lives to helping others in Virginia in need. Their 79-page Care Coordination Notebook provides comprehensive information on the care financing options available in Virginia

Social Security Administration

Information on the Supplementary Security Income program, which can provide monthly benefits to people of any age with a disability who meet income eligibility requirements

Social Security Administration: Benefit Eligibility Screening Tool

The Benefit Eligibility Screening Tool (BEST), a tool you can use to find out if you could be eligible for benefits from any of the programs Social Security administers.

U.S. Department of Education

This website provides information on the 60% of student aid for postsecondary education that is provided by the US Department of Education.

U.S. Department of Health and Human Services

Offers a good reference document called Understanding Medicaid Home and Community Services: A Primer.

Virginia Department of Medical Assistance Services

DMAS is the agency that administers Medicaid and the State Children’s Health Insurance Program (CHIP) in Virginia. The CHIP program in Virginia is called Family Access to Medical Insurance Security (FAMIS). Its mission at DMAS is to provide a system of high quality and cost effective health care services to qualifying Virginians and their families.

Virginia Department of Social Services

The site provides the Virginia Medicaid Policy Manual, which includes the Medicaid application, requirements, resource and income qualifications, covered services and appeal processes.

Family Resource Center: Managing Your Child's Condition Section

SECTION A: PARENTING SKILLS / MANAGING CHALLENGING BEHAVIORS

Center for Effective Collaboration and Practice

Information on emotional and behavioral problems with focus on ideas that work in education, functional behavior assessment, early intervention and other topic areas.

Center for Parent Information and Resources
The Center for Parent Information and Resources (CPIR) provides a wealth of general information about special health care needs, including definitions of disabilities which may qualify for special education and a 13-page guide to over 90 national disability organizations.

Center on Positive Behavioral Interventions and Supports

This site contains information on what works in preventing challenging behaviors, and provides an extensive set of articles, presentations, video clips and other materials on positive behavior support.

Center on Social and Emotional Foundations for Early Learning

Provides What Works Briefs, which summarize effective practices for supporting children’s social-emotional development and preventing challenging behaviors. Also contains training modules on classroom preventive practices and individualized interventions to determine the meaning of challenging behavior and develop a behavior support plan.

Council for Exceptional Children
An organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

Parent to Parent of Virginia
All of the staff of Parent to Parent of Virginia have family members with disabilities. We understand the day-to-day struggles with being a parent or grandparent and have dedicated our lives to helping others in Virginia in need. Their 79-page Care Coordination Notebook provides comprehensive information on the care financing options available in Virginia. Chapters 6 and 9 of the Care Coordination Notebook provide excellent information on building effective communication skills.

Special Olympics Virginia

A year-round program of sports training for children and youth with intellectual disabilities.

Technical Assistance Alliance for Parent Centers
Links to a broad range of resources on building more effective collaboration between parents and education professionals and a number of excellent resources on the IDEA. 

Technical Assistance Center on Social Emotional Intervention
TACSEI helps decision makers, caregivers and service providers have an enhanced awareness of, understanding of, and ability to use evidence-based practices to improve the social-emotional outcomes for young children with, or at risk for, delays or disabilities. It also focuses on promoting social-emotional competence and addressing challenging behavior.
 

The YourChild Internet Guide

This website helps you to find the best resources on parenting and child behavior and development. It lists the most trustworthy sites on the Web for the information you need as a parent of a child with special health care needs.

Section B: ASSISTIVE TECHNOLOGIES AND SUPPORTS

AbleData

Information about assistive technology products and equipment.

Council for Exceptional Children
Excellent set of publications available online on topics such as inclusion, assistive technology, assessment, ADD, autism, behavior management, IEPs, IDEA, and transition.

 

Kids Together, Inc.

Kids Together is a nonprofit organization providing information for children and adults with disabilities, including information on assistive technology and other special ed topics

 

Trace Research and Development Center

An organization whose mission is to address the communication needs of people who are nonspeaking and have severe disabilities, by providing a broad range of information and links on assistive technology.

Two Little Hands Productions

A wide range of information and educational materials on sign language and its benefits for children with normal as well as impaired hearing, in addition to children with other conditions that may interfere with verbal communication.

Virginia Assistive Technology System

Information on assistive technology and how it can help your child with special needs.

Virginia Assistive Technology Loan Fund Authority

Information on how to get assistive technology services for your child.

Section C: MEDICAL/CLINICAL THERAPIES

Kennedy Krieger Institute

Kennedy Krieger Institute treats children and adolescents with developmental disabilities including autism, cerebral palsy, behavioral, neurological and genetic disorders, traumatic brain injury, learning disabilities, and more. Their website offers information on a broad range of diagnoses.

Section D: RESPITE SERVICES

National Respite Locator

Online source for respite programs.

Respite Resource Project (.pdf)

Information about and support for respite services, including resource information and a summer camp guide.

Family Resource Center: Managing Crises Section

Resources

American Academy of Pediatrics (.pdf)

Emergency Information Form for Children with Special Needs, a form that can be downloaded and updated on your PC, designed to be printed out and stored in the front of your child’s Care Notebook.

The Center for Children with Special Needs

Care Organizer, a more detailed document which provides an in-depth summary of your child’s special needs, available for download.


Disability.gov’s Guide to Emergency Preparedness and Disaster Recovery

A resource center that offers information and tools related to emergency preparedness for individuals with disabilities.

disAbility Law Center of Virginia
The disAbility Law Center of Virginia’s mission is to advance independence, choice and self-determination; protect legal, human and civil rights; and eliminate abuse, neglect and discrimination of people with disabilities through zealous and uncompromising legal advocacy and representation.
 

File of Life Foundation

Source for the File of Life, a magnetic document providing emergency workers with a summary of your child’s special needs designed to be attached to your refrigerator door, also available form many local fire departments.

The Legal Aid Justice Center
Nonprofit organization that supports legal service to protect the rights of students with disabilities in Virginia.

Ready.gov

Disaster preparedness website page that focuses on helping families with disabilities to be prepared, including how to prepare a kit, make a plan, and stay informed.

Virginia Legal Aid

Source to find a legal aid office and get answers to legal questions.

WrightsLaw

A wealth of information about managing behavioral crises at school.

Family Resource Center: Working for Positive Change Section

Family Resource Center: Specific Conditions Section

Attention Disorders
Autism
Cerebral Palsy
Down Syndrome
Emotional/Behavioral Disorders
Epilepsy/Seizure Disorders
Head Injuries/Stroke
Hearing Disorders
Intellectual Impairment/Retardation
Learning Disablities
  • Council for Exceptional Children – Excellent set of publications available online on topics including learning disabilities

  • International Dyslexia Association – FAQs and fact sheets on language-based learning differences

  • Kennedy Krieger Institute – The Kennedy Krieger Institute treats children and adolescents with developmental disabilities including learning disability

  • Learning Disabilities Association of America – A broad selection of free downloadable articles and booklets on learning disabilities, as well as links to government agencies, teaching resource sites, professional organizations, and other resources that serve people with learning disabilities

  • LD Online – Background information on learning disabilities and ADHD, as well as hundreds of articles, multimedia, columns by experts, and a comprehensive resource and referral guide on both topics

  • National Center for Learning Disabilities – The mission of NCLD is to improve the lives of the one in five children and adults nationwide with learning and attention issues

  • Parent Educational Advocacy Training Center – Listing of parent support groups for parents of children with learning disabilities

  • TeachingLD – A website providing information and resources for teaching students with learning disabilities, including background information on learning disabilities and a series of downloadable “teaching how-tos” articles from the Council for Exceptional Children

  • Special Education Resources on the Internet – A collection of information resources of interest to those involved in the fields related to Special Education, including learning disabilities

Pediatric Arthritis
Visual Disorders