By Catherine Hughes
Families in Pennsylvania who have been receiving crucial services for their loved ones through Medical Assistance by means of a qualifying diagnosis are being targeted by the Pennsylvania Department of Public Welfare. Through a Bulletin dated in mid-September, families who have been receiving a number of services in their home, community or school – Behavioral Health Rehabilitation Services (also called “wraparound”), Family-Based Mental Health Services, speech, occupational and physical therapies, medications, doctor’s visits and more through Medical Assistance under “PH95”– are now being asked to contribute (see photo above) what the Department of Public Welfare (DPW) feels is their “fair share” of the cost involved in caring for these children aged zero to eighteen.
Below is a review of Pennsylvania’s idea of “fair share” and other key points regarding this new mandate, include commentary from devastated families, and share information about how others can get involved in protesting this outrage.
DPW considers “fair share, in this case, to be up to 5% of the family’s gross income (income before taxes), with no consideration to any out-of-pocket expenses including private insurance premiums, medical costs not covered by insurance or the state, mortgages, car payments, groceries, electric bills, and more.
$616 a month is our assault, hmm, I mean co-pay” laments Nicole Feaster, wife to Craig and mother to Rena, 11 and Claire, 4, residents of State College, PA. “At first glance, impact on our family isn't readily visible. My husband is a doctor, and I am a pediatric registered nurse. Our daughter, Rena, was diagnosed with PDD-NOS when she was 18 months old. She has received intensive BHRS since she was 24 months old. She has made tremendous progress - she became a verbal communicator at 36 months old! Fast-forward to present day Rena, she is going through puberty, and struggling with PANDAS, to boot. The behavioral health services that she receives, paid by Medical Assistance, are essential to her daily life. Rena’s younger sister, Claire, is also covered by Medical Assistance because she has bilateral schizencephaly, resulting in spastic quadriplegic cerebral palsy. Claire is wheelchair-bound and nonverbal. She requires a nurse to attend pre-school with her to administer gastrostomy tube feedings and monitor for life-threatening seizures. She needs a wheelchair van and wheelchair ramp. With a $616 per month Medicaid co-pay, those needs will go unmet. The girls ' future needs are leveraged. Please, Pennsylvania, don't punish our daughters with a 'disability tax' on their family.”
Act 22 of 2011 gave DPW Secretary Gary Alexander the unprecedented power to impose co-pays on families based on their income without being required to navigate the usual regulatory review process, a process that ensures state agencies do not overstep their authority or are enabled to act in a manner that is inconsistent with the public interest. The proposal to force a co-pay on a family who has a loved one with a disability was announced in mid-August, and targeted families making 200% of the poverty level.
In a statement released just days, ago, Secretary Alexander said “…services in this category for children with mental and physical disabilities cost taxpayers approximately $700 million a year, yet many of the families receiving this care have the ability to pay their fair share. About 80 percent of these families have incomes above 200 percent of the federal poverty level and one in four have an income above $100,000 a year.”
families affected by autism, behavioral health challenges and physical
limitations are outraged. The autism community is especially infuriated because
enforcing existing legislation under Act 62 alone would alleviate much of the
burden, at a much higher cost-savings than Secretary Alexander’s plan.
They aren’t just wrong by a few dollars. They are wrong by thousands.
group appropriately entitled “Shocker! The DPW Can’t Add! My Co-Payment
Statement is Incorrect,” is collecting stories from parents and caregivers
across the state who are publicly announcing their errors for all to see.
“My husband is a commission-only salesman, thus my income is the only stable monthly income in our household. I am not sure where they received the information, as they have over-estimated my monthly income by MORE than $2000! Not to mention, they want to count the income I make from a casual position (income that isn't consistent or reliable from month-to-month.) I know we are in a better situation than many others, but we won't be able to afford these co-pays!” says Shalee Nash.
Jim Bouder, a disability advocate with much experience navigating the legislative arena, who leads the charge at PennAutism.org says, “[The State][o]verstated my annual income by over $44,000. Thanks for starting this page!”
“Overstated my husbands income by $100,000.00. My husband is an employee of the commonwealth of PA and his salary is therefore public record and certainly available to an agency of the commonwealth itself!” says Shelly Koch.
Holly Bortfeld says, “I got my letter and they included types of income that are not legal to be included for taxes such as child support. I know many others who have had everything from death benefits to step-parents who are not financially legally obligated in ANY way to the child and even siblings in the household with part time jobs. It's ludicrous.”
“My income was over-estimated by about 180% on the DPW letter that we received. Right now, after a very hefty raise due to a promotion, I still earn, $5662.67 LESS than DPW thinks that I earn. Over the course of the year, this is an error that amounts to $67,952.04. Near as I can make out, they must have added together two pay stubs from our application for re-qualification for our daughter last year,” shares Abby Schrader.
“I was overestimated by $49,000 per year!” says Beverly Popolo.
We could be
here all day. Note: these are reports from people who actually received their
letters The message is abundantly clear – the DPW is not ready to manage this
change by the November 1st implementation date for all families.
A rally held last Tuesday, September 25th at the Capital Rotunda united families from across the state who protested the threat of co-pays. Speakers included Representative Mike Sturla of Lancaster, Jim Bouder of Manheim, Catherine Hughes of White Oak, and Kimberly Shank of Quarrysville.
“I have to look at my two girls (Allie, 5 and Abbie, 7, Pervasive Developmental Disorder – Not Otherwise Specified / PDDNOS), and say to them, I’m sorry. I love you. But I can’t do what’s best for you,” cried Shank as she looked into the faces of the crowd.
“This bulletin is a vicious, unnecessary threat to families, to providers, to our schools. Yet, Governor Corbett “supports the human services community?” We have paid enough,” Hughes shouted during her speech. Hughes is mother to Christian, 14, previously diagnosed PDDNOS, and also serves Family Behavioral Resources and the Autism Education and Research Institute as the Director of Family Support Services.
Video for three of the four speeches is available at the Facebook page of the Pennsylvania Community Providers Association, or can be found on YouTube by searching for the page of “paproviders.”
MORE FACT OR FICTION:
ARE FAMILIES GETTING THE TRUTH FROM THE DPW?
Let’s break some more things down for you, shall we?
NOTHING CAN BE DONE TO STOP THIS CHANGE, RIGHT SECRETARY ALEXANDER? RIGHT GOVERNOR CORBETT?
We don’t think so. Sorry. Pennsylvania families, providers and advocates are taking a stand.
ü Continue to contact Pennsylvania legislators. Find yours here: http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/index.cfm?CFID=13478946&CFTOKEN=93626022
ü Fax them a letter – either personalized, or use a sample and also a copy of the policy brief from www.pennautism.org . Many materials are available on the site for your reference.
ü Continue to email or call families and community contacts and get them involved. The entire commonwealth has reason for concern.
ü Fax a copy of your letter, maybe with a family picture, to Governor Corbett himself: 717-772-8284. You can call his office at 717-787-2500. Put a voice and a face to our stories!
ü Tell your legislator… TODAY… to support HR 879, which will delay the implementation of co-pays until a full, comprehensive study can be conducted and so our true, fair, legislative process can be followed.
ü Join our Facebook page, PennAutism.org for links to resources, articles, and up to the minute information as it becomes available.?
FINAL WORDS FROM SELF-ADVOCATES
"This is very upsetting. I think people should be able to get the help they need so they can make friends, so they can learn to talk when they cannot, not to stress so much, to have a better chance. Kids who are not getting help, should, so they and their family can be happy and live a good life.” – Christian Tomko
Christian Tomko is a 14 year old ninth grade student with PDDNOS who attends Freshman Academy in the McKeesport Area School District in Allegheny County, PA. Christian is the son of Catherine Hughes, mentioned above.
“With two other forms of insurance covering my wrap-around services, Act 62 should be further implemented before co-pay prices even think about going up. Also, as a military child, TRICARE, my secondary insurance, is just now starting to provide ABA services after so many years of denying it. If co-pay prices go up for services that are essential to my well-being, not only will it reverse all the positive progress I've made, but it will hurt people who can barely afford it already.” – Alex Mellott.
Alex Mellott is a 16-year-old student in State College, PA, who has just recently become an advocate for students across the country. His video, Bullying - Words Can Kill, has reached lawmakers and organizations across the country and has become a viral hit on YouTube. He enjoys traveling, being around family, and celebrating the successes he's made for himself.
Pennsylvania’s families are clearly not giving up, even though the state intends to swiftly move forward with imposing the co-pays. Governor Corbett, Gary Alexander, allow me to reintroduce you to the disability and autism communities, We are loud, we are committed, and we have an unstoppable drive. We fight for our loved ones against all odds. This fight is far from over. I urge not only Pennsylvanians, but families, advocates, and professionals across the nation to help us spread the word about this outrage and help us to be heard. If it happens here, it can happen anywhere. An attack on one is an attack on us all.
Catherine Hughes is the proud mother of Christian Tomko, and resides in White Oak, PA. Hughes is the Director of Family Support Services for both Family Behavioral Resources and AERI Behavioral Health Services / Autism Education and Research Institute, all of which provide a multitude of services to children and families impacted by a diagnosis across the lifespan. Through her professional roles and her personal life, she is a dedicated advocate inspired by her son's diagnosis eleven years ago.