The Arc of Indiana Blog

Last week The Arc of Indiana testified against a proposal to discontinue First Steps services to infants and toddlers with disabilities if their parents have fallen behind on making co-payments for services.   Today, a good friend and strong advocate for people with disabilities asked “Shouldn’t people pay something for First Steps services if they can afford it?”  Seems to make sense, or does it?

The Arc of Indiana has always recognized personal responsibility.  As a family-based organization we know firsthand that Hoosier families who have a loved one with a disability willingly and lovingly take on the responsibility of providing and caring for their family members.    In fact, the overwhelming majority of families are the only caregiver for their son or daughter and receive no services from the state system.  Study after study documents the unseen, extra costs families incur in providing for a child with a disability. Yes, we recognize personal responsibility and know families contribute in ways no government agency will ever understand or appreciate.

So why are co-pays for First Steps services an important a topic?  There are just two reasons for co-pays.  The first is the belief that families “who can afford it” should pay some amount of the overall cost of services their infant or toddler with a disability receives.  Co-payments can range from $24 a month to $960 a month, depending on the income of the family.  However, a bill now moving through the Indiana General Assembly SB 35 would remove the maximum amount a family must make in co-payments.  If SB 35 passes, those amounts will increase.   

Co-payments currently generate, we are told, $1 million a year for a program that spends over $50 million.  Once you deduct the cost of collecting that - and people argue about the true cost - perhaps somewhere between $900,000 dollars to $0 is actually generated - if you consider the cost of staff time to calculate what a family’s co-pay should be, billing, processing payments, rebilling (often because a family is waiting for insurance payments), etc. etc.  Economically, it makes little sense; but we lost this argument long ago to people who felt, “Families should pay!”

The second reason for co-pays is more subtle.  The co-pay forces families to decide whether or not they can afford for their child to receive a service or services.  Higher co-pays lead families to say “no” to a service their child may very much need.

The New England Journal of Medicine published a study recently that showed a dramatic reduction in Medicare doctor visits when co-pays were raised.  The study also documented this led to more hospitalizations and higher, not lower, costs.

We believe the same is true for First Steps. Requiring families to make co-payments may limit the critical services that will have life-long cost implications for children.  It may make some feel virtuous today for “saving money” but the cost tomorrow in human and economic costs are staggering.

The Arc of Indiana asked the Indiana Family and Social Services Administration for data on the current co-pay proposal.  You can find their answers at: http://www.arcind.org/news/?naid=31

We will continue to raise this issue - we hope you will join us.

A second public hearing for proposed revisions to the First Steps, Early Intervention Program, will take place on Monday, February 15th at 3:00 p.m. in the Indiana Government Center South Auditorium.   We encourage anyone interested in the First Steps Program to come and participate in the Public Hearing.  Families who have gone through First Steps and have stories to share about billing problems or concerns, insurance issues, etc, should come and discuss their experience.  Families should also share the positive results that First Steps has had on their child’s life.  Children experiencing developmental delays should not fall victim to the state’s financial crisis.  Other alternatives for collecting the delinquent co-pays need to be explored.