Our mission is to dramatically improve the outcomes of care for children with rheumatic conditions.

FAMILY RESOURCES

Newly Diagnosed?

You’ve just been told that your child has Juvenile Arthritis. You may be thinking...

“I thought only the elderly suffered from arthritis."

"What does this mean for my child?"

" What do we do now?”

Visit the links below to get more information about Juvenile Arthritis:

National Institute of Arthritis and Musculoskeletal and Skin Diseases KIDSGETARTHRITIS,TOO  Arthritis Foundation

Support

You may be feeling alone and overwhelmed. Are you looking for a way to meet other families living with Juvenile Arthritis? Sometimes it’s nice to know that other people understand the hardship taht you are going through. The Arthritis Foundation sponsors annual conferences, camps for kids with JA, and family events all over the United States. You and your child can meet others families dealing with JA by linking to meet other families.

Online communities like Facebook are also a great source of support. You can search for groups using Juvenile Arthritis as your topic or by visiting the PR-COIN Parent and Patient Advisory Group Facebook page.

Need assistance with medical expenses?

Juvenile Arthritis is an expensive health condition. Ask to speak with a social worker at your pediatric rheumatologist's office; they will be able to assist you in finding a program to aid with the steep costs of medical bills.  Visit the links below for assistance programs:

Shriners Hospitals for Children
Scottish Rite Hospital for Children  Partnership for Prescription Assistance NeedyMeds RxAssist


Association of Assistive Technology Action Programs (ATAP)

Each US State has programs that provide assistive technology devices to people with physical disabilities. Speech to text software and a tracball style mouse are two pieces of technology that often prove useful to children with JA. Find your state's Assistive Technology Program here!

Arthritis Educational Rights

Your child has the right, under federal law, to a 504 Plan if he/she is diagnosed with Juvenile Arthritis.  Speak to a social worker at your clinic and they will provide you with the doctor's letter of recommendation for a 504 plan. The 504 Plan protects your child’s right to access public schooling as someone with a documented disability. Schools must make necessary accommodations for your child. Ask your school administration about scheduling a meeting to create a custom 504 Plan for your child. Before this meeting, prepare a list of accommodations that fit your child's needs. Many schools will assign a school counselor or another staff member to work one on one with you to create this list. A 504 Plan does not modify curriculum; it only address your child’s ability to access their education. If your child has learning difficulties and requires changes in the curriculum, your child may qualify for an Individualized Education Plan. Visit the links below to learn about an Individualized Education Plan:

Educational Rights Kit 

Wrightslaw 504 Plan

KIDS LEGAL

Educational Rights and School Solutions Webinar and Toolkit

College or Job Training for Juvenile Arthritis Kids

There are many private scholarships available to children with juvenile arthritis and some for general disabilities. Visit FinAid! to learn more!

College Disability Services Offices

Colleges that receive government funds have to provide services to students with disabilities. Your child’s 504 Plan or IEP will be requested by your child's college. They can hen provide support to your student in requesting that professors accommodate your child in the classroom. Not all accommodations made in IEPs can be made by universities. Keep in mind that they will not adapt curriculum in accredited programs for students with learning disabilities. Your student is now seen as an adult and has to be able to make their own requests from professors.

Vocational Rehabilitation

Vocational Rehabilitation or VR/Voc Rehab helps those with disabilities and chronic health conditions train for and find work. They can help pay for vocational training programs and other schooling, provide on-site job coaching, help with workplace accommodations, etc. Find a Vocational Rehabilitation in your state at U.S. Department of Education.

 

Information on this page is suggested by PR-COINs Parent Round Table and does not reflect endorsement by PR-COIN.  It is intended as helpful information and should not be considered comprehensive in nature.

 

Partners

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