Recently the Pennsylvania budget was approved, and at the same time, state legislators also passed Act 22. Act 22 granted unprecedented and expanded power to the PA Department of Public Welfare (DPW) to change welfare code without legislature approval or oversight. As a result, DPW can enact Medical Assistance (MA) premiums/co-pays for children who have disabilities, including autism, as well as change who qualifies. While no actions have occurred as of yet, there has been no transparency about the process, if stakeholders will be involved in decisions or when/if public hearings will be held. As a result of Act 22, non-elected officials have been granted power to make isolated decisions that will impact the lives of children with autism. At the same time PA granted DPW unprecedented powers, federal legislators also are looking to cut MA, as if the nation's disabled will simply disappear if they cut it.
So while Governor Corbett and like minded PA legislators have indeed passed a balanced budget and actually have a surplus, what will the the cost be to our most vulnerable citizens...the disabled? Children and adults with disabilities will still need medical services whether legislators cut services or not. So their actions leave me wondering, do the Pennsylvania legislators who voted yes to give DPW absolute power in making welfare changes understand how this will adversely affect children with autism or do they simply lack compassion?
The Face of Autism
As a parent of a child with autism, I am acutely aware of the fact that people who do not have a child with autism find it nearly impossible to understand the challenges our families face. In an effort to educate legislators, here are some factors that they may not understand. First, even though a family affected by autism lives in a middle class neighborhood, they still may still be suffering financially. In fact, many families with autism literally go broke trying to help their children. Due to the diagnosis, one parent often has to quit work to care for the affected child or adult. If you are a single parent, it can be difficult at best to find child care who understand the special needs of your child. In fact, many daycares simply will not accept children with disabilities.
In addition to the lack of childcare, parents are often forced to pay for special doctors, medications, foods, therapists, communicative equipment and special camp programs...all of which are often not covered by Medicaid or many primary insurances. We have alarm and GPS systems to keep our children from wandering which can lead to injury or death. Our children often suffer from medical issues such as gastrointestinal and sleep problems, and many specialists do not take insurance.
Secondly, since our children often suffer from severe behaviors, our families often use MA for Behavioral Services or Applied Behavioral Analysis...services that may not be covered by our primary insurances. Many of our children are nonverbal or cannot communicate and out of frustration, they lose control of their emotions. Our kids meltdown because they have issues with sensory integration and consequently, struggle to self regulate every minute of the day. Everyday, our families struggle to help our children get control of their behavior so that we can go one day without meltdowns. As a result, many of our children rely on the critical behavioral health services that without MA would not be affordable to many parents.
Behavioral health services can mean the difference between a child with autism being able to live independently some day or needing a costly, government supported group home or institutionalization for the rest of their lives. For example, if my son had not been able to access behavioral health services via MA, he would not be where he is today. My son was essentially nonverbal when he started services, and today, he may actually be able to go to college someday and live independently. Because my primary insurance has never covered autism services, Medical Assistance saved his life. And it is not just my son who has benefited. Thousands of children across the state have a chance at independence because of MA.
The fact is that despite my attempts to describe what it is like for parents trying to raise a child with autism, my words don't do it justice. Let's just say that what we experience on a daily basis is not even close to being a free ride. Despite our best efforts, many of our children will not become independent. Due to the lack of adult services, parents often continue having to stay at home caring for their adult children. There are thousands of adults on PA waiting list who are essentially being ignored by legislators...as if these adults will simply disappear. Regardless of how society would like to ignore autism, our children with autism grow into adults who have autism who may require caretakers for the rest of their lives.
Tearing Away Critical Services to Disabled Children and Adults
As DPW readies itself to implement premiums or co-pays, most families affected by autism are already paying hefty insurance premiums and copays for primary insurances. And thanks to the passing of Act 62, again by our PA legislators, many of insurance companies, self insured or out of state, are exempt from covering autism services entirely...therefore continuing the discrimination against autism. While Act 62 was a valiant attempt at mandating coverage, many families are still left without coverage thanks to the exemptions. Therefore, for many families, MA is still the only insurance that will cover autism.
The reality is that autism communities across the country, state by state, are fighting to end the discrimination and pass insurance mandates so that autism services are covered by insurers. And it does feel like legal discrimination considering some states allow insurers to pick and choose which medical conditions they will cover. For example, what if insurers just decided not to cover diabetes services/treatment? Or cancer? Or asthma? That would never happen because people would be in an uproar. So how is it somehow acceptable the insurers are exempt from paying for autism services? Yet that is exactly the case for many families.
In the end, I get that this decision to give DPW to change welfare code without legislator approval was purely financial. But looking at things from only a financial perspective, is it really more cost effective to take life changing services away from kids with autism? Sure, in the short term the state will save money. But when kids with autism start losing services and do not make significant progress, because their parents cannot afford to pay two insurance premiums/co-pays, what will happen to the kids? Who ends up paying for the children when they grow up into adults and cannot live independently? How much will it cost taxpayers to pay for a lifetime of housing and heath care for an adult with autism? Do any of the legislators even consider the long term consequences of their short sighted decisions?
Times are Tough
Life with autism is generally no picnic, but it appears most of the state and federal legislators don't know or care. Most of the responses from the folks who passed the PA budget are quick to say "Times are tough.". Yeah, really? Well try raising a child with autism and then talk to me about tough.
The ironic thing about this cliche is that it is often the poor, disabled and vulnerable who are told to "buck up" and suffer cuts to their services. I actually had a local legislator write me to say that the autism services via MA were for only those "who could not afford it". Seriously, do they even know how much money parents of children and adults with autism spend trying to keep their child well? Of course not. So how could they possibly begin to predict what a family can afford?
Autism Knows No Political Parties
In the end when it comes to voting, our families are Republican, Independent and Democrat, rich and poor and come from all cultural backgrounds. So while our legislators may have just voted along party lines to begin the process to strip down MA, autism doesn't care what your political party is. The families I know who use services come from all walks of life, and they desperately need MA to access behavioral health services for their children.
Our lives with autism are not by any means a cake walk. And no amount of money will "cure" our childrens' autism. The best we can do is try with everything we have to help our children get better so they can be independent. As long as states let insurers get away with not paying for autism services, MA will remain critical to many families who have children with autism....many of whom voted for the same legislators who are now cutting services to their children.
What Measures Real Success?
I am left asking Governor Corbett and all the legislators who supported passing Act 22, do you really understand the negative impact this bill has on children with autism and their families? Or do you understand and simply care only about cutting social services dollars so the budget is balanced immediately without a care of what happens in the future? When kids start dropping out of MA, will you tout your decision to take MA away from kids with autism a success? In my opinion, real success is providing services to kids and adults with autism and other disabilities so they can become independent citizens and contribute to society.
It is not too late for elected officials to get to know the families who have children and adults with disabilities and autism. We live all over the Pennsylvania, and the United States for that matter. Our children with autism live in your neighborhoods, go to your churches and attend your school. It is not too late to look into the face of a disabled child and tell them you will reverse your decision on Act 22. It is not too late to tell them that their future matters...that you will be there for them. Our children may not vote but they are a citizens, with a a future that depends on their ability to access medical services.
I have hope that compassion still lives somewhere in the hearts and minds of those looking to pare down state and federal budgets. And if compassion does not exist, then I pray they look at the long term outcomes of what happens when kids with autism don't get services....because our kids don't simply go away. No, they grow into adults who end up needing government assistance forever if they don't get help now. The question is will legislators take the time to listen because they care about the future of our children? Or will they choose to look in the face of that child with autism and say, "Hey, I balanced the budget...Times are tough."
Health Law Project