Parent Resources
Parent Resources
For Parents & Youth
We have compiled a list of web sites and resources that you may find helpful. When you click on these links, you will be leaving the American Syringomyelia & Chiari Alliance Project (ASAP) web site.
Link Disclaimer: These helpful resources will direct you to third party websites. ASAP is not responsible for the content or accuracy of information found there, nor do we endorse any of these sites.
Chronic Pain
These sites provide information on issues pertaining to pediatric chronic pain.
Tools for Parents of Chiari Patients
- What It is Like to Be the Parent
- ASAP’s Video Gallery
- Prescription Drug Information
- How to get your child evaluated
- Requesting an initial evaluation for Special Education Services
- How to Talk to Health Professionals So They Will Listen
Disabilities/Educational Rights
There are many federal laws which protect those with disabilities. These sites contain information about disability and educational rights that may pertain to your child.
- IDEA: Individuals with Disabilities Education Act 2004
- Office of Special Education Programs (OSEP)
- Section 504 and the Education of Children with Disabilities
- Wright’s Law Special Education Law and Advocacy
- National Dissemination Center for Children with Disabilities
- Child Care Services for Children with Disabilities
- Pacer Center – Parent Advocacy Center for Educational Rights
- FAPE – Family and Advocates Partnership for Education
- LD Online – Information on Learning Disabilities and ADHD
- National Center on Learning Disabilities
- Learning Disabilities Association of America
- CHADD – Children and Adults with Attention Deficit/ Hyperactivity Disorder
- Find a Parent Training and information Center
- Brave Kids
Preparing an IEP for your Child
The Parent Educational Advocacy Training Center (PEATC) offers an Individualized Education Program (IEP) Checklist iPhone app. School-aged students with disabilities are provided an Individualized Education Program designed to support their unique educational needs. The IEP Checklist App helps parents of students with special needs become better-informed advocates by making IEP information easier to access. If you are unable to reach an agreement about your child’s education plan, PEATC also offers resources for dispute resolution.
Continuing Education Resources for Students with Disabilities
When applying for disability-related scholarships, please read the details carefully. Each program defines “disability” differently and may have unique eligibility requirements based on GPA, level of study, or field of interest. Check with your school’s disability services or financial aid office for internal awards, and set up a dedicated email and calendar reminders to stay on top of new opportunities.
Check these resources for applicable scholarship opportunities:
- Nursing Scholarships for Students Living with Disabilities
- Scholarship for Students with Disabilities Studying Health/Disability Fields
- Top 126 Scholarships for Disabled Students – Scholarships360
- Defining Disability Scholarships and Eligibility Criteria
- Scholarships for Students with Disabilities
- National Center for Learning Disabilities
- College Consensus Scholarships for Students with Disabilities
- Top 54 Scholarships for Students with Disabilities – Bold.org
Affordable Colleges Online
Affordable Colleges Online is a free community of resources and tools that span topics such as financial-aid and college savings strategies, online learning resources, affordability and scorecard rankings, opportunities for people with disabilities. With more adaptive technologies and progressive legislation, prospective college students with disabilities have resources available to make the transition to higher education less stressful.
Affordable Colleges Online also offers a guide to available scholarships and financial aid for students with disabilities.
Affordable Degrees Online
Affordable Degrees Online explains some of the lesser-known ways to reduce the cost of a college degree. Sadly, few students realize that they might be able to help bring their dream school within reach financially by taking advantage of their prior life experience, as well as select online courses (varies by school). Here are a few important features of the site:
Networking for Children & Teens
Medical Assistance for Disability Patients
There is help available. UnitedHealthcare has grants available for children’s medical needs that are not covered under commercial insurance plans. To find out more visit UnitedHealthcare Children’s Foundation. You may also find help with resources to support children’s healthcare needs at the Children’s Health Fund or the Ronald McDonald House Charities for medical expenses.
The Bobby Jones Open Equipment Grant has made it possible for numerous ASAP members to improve their quality of life and enjoy a more independent lifestyle. Grant awardees have received help purchasing ramps, accessible showers, lift chairs, wheelchair accessories and more. Download and complete the BJO Equipment Application.
Patients receiving treatment for chronic pain can apply for grants through the Patient Advocate Foundation Co-Pay Relief. This program provides financial assistance for out-of-pocket costs for individuals with chronic, life-threatening, or debilitating diseases.
Travel Assistance for Disability Patients
Many organizations provide free or reduced travel assistance to those in need. Amtrak also provides discounts to travelers with disabilities.
