The Children/Youth With Special Health Care Needs (shortened as CSHCN or CYSHCN) is a program in each state that provides medical care and other related services for special needs children. These programs are funded by grants from the U.S. Health Resources and Services Administration (HRSA), commonly referred to as Title V, Maternal and Child Health Services Block Grants. Similar to the Children’s Health Insurance Program (or CHIP), the programs are federally funded but operate independently at the state level. It was originally enacted in 1935 as part of the Social Security Act, and converted to a Block Grant Program in 1981.
Who it Serves
The program assists with the cost of medical care specifically for special needs children. The HRSA defines special needs children as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” This definition is purposefully broad, covering and including a large number of diagnoses. According to their 2011/2012 survey there are approximately 14.6 million children in the United States have special care needs, roughly 19.8% of children. And about 65% of these children “experience more complex service needs that go beyond a primary need for prescription medications to manage their health condition.” Some of the most common health issues include ADD/ADHD, Depression, Speech Problems, Asthma, and Learning Disabilities. 41.1% of Children with Special Health Care Needs experience two or more health issues. According to the 2005 survey by the HRSA, a full 8.8% of families with a special needs child were uninsured that year.
Financing
The amount each state receives for their program is based on need. “Individual State allocations are determined by a formula which takes into consideration the proportion of the number of low-income children in a State compared to the total number of low-income children in the United States.” Each state must apply for a formula grant each year, submit and annual report, and conduct a “State-wide, comprehensive Needs Assessment every five years.” The states must also match the federal amount given, “…must match every $4 of Federal Title V money that they receive by at least $3 of State and/or local money. This “match” results in more than $6 billion being available annually for maternal and child health programs at the State and local levels.”
What are the Benefits?
Benefits differ by state, but generally include financial assistance for medical care, therapy, medical equipment, prescriptions, and other costs. Many special needs children have higher medical costs due to a need for finer-tuned healthcare, such as a personal nurse or care coordinator. These costs are also covered by the CSHCN grants in most all cases.
Effects of the ACA?
The effects of the Affordable Care Act (AKA Obamacare) for children living with special needs have been positive. Most notably children with special needs are considered to have a pre-existing condition. Under the Affordable Care Act insurers are no longer able to deny coverage due to this, making insurance options much more flexible for families with special needs children. Another positive is that children can now stay on their parent’s health insurance up to age 26, which is very beneficial for special needs children transition from pediatric to adult health care. For a comprehensive list of the impacts of the Affordable Care Act click here.
How Do I Find a Program?
We list each CSHCN/CYSHCN by state on the NeedyMeds site. We list them under State-Sponsored Programs, a sub-category of Government Programs. From our home page click on State-Sponsored Programs, find your state, and the CSHCN/CYSHCN Program will be listed on that page. Remember that in some states the program goes by a different name, for example in Pennsylvania it is “Children with Special Health Care Needs.”
