Title V Programs for Children with Special Needs

Every state has services for children with special health care needs. The Maternal and Child Health Services Block Grant, or Title V of the Social Security Act, funds these services. The grant tasks each state with ensuring the health of our nation’s women and children, including children with special health care needs and their families. Each state is permitted to tailor its services and programs to best meet its specific needs. This variation between states can be confusing because state Title V programs often have different titles and types of service.

State Medicaid and CHIP program

Every state’s Medicaid and CHIP program is changing and improving – most states are expanding coverage for low-income adults; all states are modernizing their Medicaid/CHIP eligibility, enrollment and renewal processes and systems, and taking advantage of many of the new flexibilities provided by the Affordable Care Act. Finally, states are coordinating the application and enrollment process with the messaging and policies for the Health Insurance Marketplace operating in their state to ensure that there is no wrong door to coverage.

Social Security Disability Benefits

The Social Security Administration (SSA) runs two disability programs known as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). 

Able Savings Accounts

ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families. he beneficiary of the account is the account owner, and income earned by the accounts will not be taxed. Contributions to the account, which can be made by any person (the account beneficiary, family and friends), must be made using post-taxed dollars and will not be tax deductible for purposes of federal taxes, however some states may allow for state income tax deductions for contribution made to an ABLE account.

How to Make Your Health Insurance Work for You

Now that you are all signed up for your 2019 insurance plan, learn how to navigate it! NORD hosted a webinar to aid rare disease patients and caregivers in learning how to make their health insurance work for them. The webinar recording here covers how insurance works, an overview on the approval process and tips on how to successfully reverse a denial.

Good Rx

Prescription drug prices are not regulated. The cost of a prescription may differ by more than $100 between pharmacies across the street from each other! Insurance isn’t helping like it used to. In the past 10 years, insurance companies have passed 25-80% more of the cost of drugs onto patients.  GoodRx gathers current prices and discounts to help you find the lowest cost pharmacy for your prescriptions. The average GoodRx customer saves $276 a year on their prescriptions. GoodRx is 100% free. No personal information required.

Tyler's Clinic Travel Fund

Travel and Clinic Support fund is designed to support Dup15q Alliance Clinics and help families who have a need for their child seen at a Dup15q Clinic

LCG Foundation Patient Assistance Program 2018

The LGS Foundation's Patient Assistance Program provides financial assistance to individuals with LGS to help pay for medical expenses not typically covered through insurance or other programs.  The grant cycle for 2018 opened on January 10th and will remain open until all funds are depleted.   Each family may only apply for one award. The maximum allowance per family per year is $1,000 with a lifetime maximum of $2,000.

2019 Dr. Blanca Vazquez Summer Camp Scholarship Program

We are pleased to announce that we are now accepting applications for our annual 2019 Dr. Blanca Vazquez Summer Camp Scholarship Program. The mission of this Scholarship Program is to provide children living with epilepsy the opportunity to participate in creative and fun activities that will facilitate everlasting friendships with their peers. Scholarships are available to children’s families in need of financial assistance.

New Jersey Families financial resource: 

A financial resource to help New Jersey families with uncovered medical expenses for their children. Eligibility requirements: Child must be 21 or younger when expenses incurred, expenses exceed 10% of household income, family must be NJ resident 3 months prior to applying. ​


Wheelchairs 4 Kids

 Although our name may be Wheelchairs 4 Kids, our plan involves so much more than providing wheelchairs for America’s disabled children.  Our goal is to give every child with mobility challenges the best opportunity to live life at its’ fullest.  We provide wheelchairs,  gait trainers, AFO’s, hoyer lifts, adaptive strollers, adaptive bikes, bathing solutions, vehicle modifications (contingent on the type of vehicle) and some home modifications providing the family owns the home. The child must be under the age of 21 and have a member of their medical team verify their medical condition and mobility  needs.

Autism Speaks - Financial Planning Toolkit

A tool kit to provide you with essential information and guidance you need to develop a plan for your child’s financial future.