… when the state decides

A few days ago I was interviewed for a news story about Elizabeth and what it meant as a parent to have her involved in an event that centered around inclusion.  This is not a word I use often although it is the platform of which Life with Elizabeth was founded on.  We use words like tolerance, acceptance and our hashtag #whynotbethedifference.  The story was about our local marathon, The Hogeye that so graciously opened registration to children who by themselves could not participate in a marathon by allowing runners to push them in specially designed wheelchairs.  When the doctors sat down with me to discuss the severity of Elizabeth’s disability one of the many examples of things she would never be able to do was run a marathon.  This weekend all that changed because we have people who believe in a simple word with a simple definition.

INCLUSION
The act or state of including or of being included within a group or structure.

Elizabeth was born at 22 weeks and 5 days into my pregnancy.  I did nothing wrong to cause her premature birth.  I saw my doctor regularly and followed all the do’s and do nots of pregnancy.  When I left the hospital with Elizabeth months after she was born I called her my million dollar baby.  Her hospital bill was well into the millions and I was told that her future care would cost around $440,000 a year without emergencies.  I had private insurance that had capped out not even half way through her hospital stay and I knew that I would never be able to afford the care she would need during her lifetime so I opted to apply for Medicaid.  This was a hard decision for me as there is a stigma associated with state funded medical care but I knew it was going to be the only choice I had to ensure Elizabeth was given every opportunity to have the best possible healthcare for her needs, some of which I would not know about for years to come.  Medicaid is not easy to navigate and it does have its challenges but it was working for us the best it could and it covered Elizabeth’s medical expenses and allowed me to keep her home, out of an institution and choose a good team that I have been more than happy with over the years.  Medicaid also alleviated the financial stress that a family with a special needs child should not endure in order to focus their time and attention on caring for their disabled or terminally ill child.

It’s no secret that our state has a lot of different opinions on the Medicaid program.  Republicans and Democrats view it very differently based on their party’s stance at the time and which elected officials are holding office.  The Medicaid program has changed over the years mainly in part to which party carries the office of governor.  It’s very politically run and clearly it has never been about what is best for the beneficiary.  When you participate in state funded healthcare coverage you do give up some control; however you do have rights to disagree, appeal and even have the opportunity to speak with your doctors who can help you override some of the decisions that the state makes on your behalf without knowing you or what is best for your medical care.  Medicaid as a whole has been passed out like lollipops at a doctor’s office.  It has become the go to for health insurance and is full of fraud, abuse and an unwillingness to look at what is the reason or reasons behind why the state is consistently looking for ways to cut corners in order to keep up with the overwhelming approval of applications.  Let me clarify something here … I believe that everyone needs help at some point in their lives.  Whether it is due to an illness, a lost job or an emergency beyond their control.  Government was founded on these very issues; ways to help their constituents in times of need.  Over the years we have been a greedy and entitled nation and the focus shifted from short term help to a way of life.  The end result is exactly where we are right now, stuck with government funded programs that the government can’t afford and quite honestly no amount of legislation is going to bail us out if we don’t stop electing politicians who care more about themselves and the title of public office instead of their constituent base.  Several years ago I worked for the Federal government.  I have written on this before and you might remember that I wanted to hold a position that put me front and center.  There is a natural high that comes with recognition and public appearances; catching a glimpse of yourself on the 10 news or your picture in a society magazine.  When I was offered a position that put me behind a desk answering a phone all day I was not too happy.  I was even less happy when people would refer to me as the Congressman’s secretary.  Constituent Services plays a vital role in a Congressman’s office, in fact I am going to venture out there and say it is the most important role played.  It also is the lowest paying job on the totem pole, the least appreciated and the most over worked position.  There is no glory given at the end of the day, no news stations that broadcast your face, no parties with front row tables and definitely no perks!  I was really good at my job.  I don’t brag easily on myself and do not take compliments well but this, this I can say with confidence.  I adopted a servant’s heart from my dad and that mixed with the struggles of bureaucracy I encountered with Elizabeth I really wanted to help better someone’s life who really couldn’t help themselves.  I was at times too emotionally involved but I rarely had to go back and tell someone we couldn’t help.  I find it totally ironic that I spent so many years helping so many people and now I am one of them.  Because I had a Congressman that believed so strongly in Constituent Services and appreciated his CS team it is the first thing I look for in an elected official.  And I can tell you this first hand, not very many politicians believe that their constituents, those that they promised to represent, the people of their district who elected them to do a job to better the community and the people they represent should be their top priority.

A few months ago I went to have Elizabeth’s medications refilled and I was told Medicaid would no longer cover the expense.  This is thousands of dollars worth of medication I was in no way prepared to pay for.  I was asked if we had new insurance, to my knowledge I did not.  I was told to contact Medicaid to verify coverage.  When I did I learned that Elizabeth was being moved to the PASSE program.  This was the first time I had been informed that the state had made a decision about Elizabeth without any input in from me to change her insurance that legislation from 2017 had passed to group those with behavioral health and developmental disabilities into a new program.  The bill was HB1706 and was sponsored and co-sponsored by the following:

Representative Aaron Pilkington – 29 year old Admin for Sparks Health

Committees:

Joint Committee on Energy

House Revenue and Taxation

House Insurance and Commerce

____________________________________________________________________________________________

Senator John Cooper – Retired from American Telephone and Telegraph

Committees:

Joint Budget Committee

Judiciary Committee

Joint Performance Review

Children and Youth Committee

Legislative Joint Auditing

____________________________________________________________________________________________

Representative Karilyn Brown – Technical Expository writer

Committees:

Joint Committee on Advanced Communications & Information Technology

Welfare & Labor

House City, County and Local Affairs

House Public Health

____________________________________________________________________________________________

Representative Charlie Collins – Small Business Owner

No longer in office

____________________________________________________________________________________________

Representative Andy Davis – Engineer

Committees:

Joint Budget Committee

House Revenue and Taxation

House State Agencies Govt’l Affairs

____________________________________________________________________________________________

Representative Grant Hodges – 28 year old Political Researcher/consultant

Committees:

Joint Budget Committee

Joint Committee on Public Retirement & Social Security Programs

House Education

House Insurance and Commerce

As I look at this list, I have to ask myself how do these people have the experience, the knowledge, the background to draft such legislation that has ultimately discriminated against the most vulnerable and high needs patients in the state?  Two of these men are under the age of 30 and I have been caring for Elizabeth for more than ½ of their life.  The list of committee assignments gravitates towards a common denominator …. MONEY.  So, in order to completely understand (insert extreme sarcasm here) the bill and the purpose behind it I printed out the 17 pages and sat down to read it.  It didn’t take long for me to realize several things that were incredibly disturbing about this bill.  In fact, it started in the first 3 paragraphs.

(1) Respect the rights and privileges conveyed by federal and state law to beneficiaries who are individuals with disabilities:
(2) Support the right of individuals with disabilities to receive quality services without discrimination;
(3)Allow an individual with disabilities to:
(A)Participate in all decisions regarding his or her care …
(B)Receive services in his or her local community, or the community of his or her choice, and in the least restrictive setting;

The bill has already failed.  But then you read on and on page 3 where it states it is the intent of the General Assembly that the Medicaid provider-led organized care system created by the department shall:

(3) Slow or reverse spending growth for enrollable Medicaid beneficiary populations and for covered services while maintaining quality of care and access to care;

And then at the very end we are met with an Emergency Clause …

It is found and determined by the General Assembly of the State of Arkansas that the current method of serving the enrollable Medicaid beneficiary populations is resulting in excessive and unnecessary costs to the Arkansas Medicaid Program and to the State of Arkansas; that the enrollable Medicaid beneficiary populations are growing at a rate that is unsustainable under the current method of serving the enrollable Medicaid beneficiary populations;

So, what did you do?  You and a group of your fellow politicians found a way to introduce a bill that would single out a group of people who already face extreme discrimination in their everyday life and decided for them without asking them, without talking with them or their doctors or their pharmacists or their equipment providers on how this would directly affect them or their healthcare needs.  You took it upon yourselves to make decisions without their knowledge, without the proper education … you are missing the most critical piece of the puzzle; the people.  The very people who you promised to take care of by introducing responsible legislation and voting for a better community, a better life for the people you represent.

The law states that you would maintain the quality and access to care that Elizabeth was receiving in the least restrictive setting.  Last week I received a letter from our Pediatrician of 15 years that he would no longer be able to see Elizabeth due to the new law.  It was the biggest blow yet as we have been trying to navigate this new system.  I spent hours on the phone with Empower Health, an insurance company the state chose for us only to be directed to their website to fend for myself in finding a new PCP.  I put in all the necessary information and much to my surprise was given 2 options for doctors.  I called the first clinic to make a new patient appointment and was told that they were no longer accepting any PASSE members.  Call back in July I was told.  So, I move onto number two only to find out that physician was no longer practicing at that clinic and appeared to be MIA and furthermore that clinic was not accepting PASSE members as well.  I then spend another 2 hours on the phone with Empower who asked me if I would be willing to drive to Jonesboro to see my Pediatrician and when I said no, that was a 5 hour track across the state I was asked if Minnesota was an option.  How about Oklahoma or maybe Texas?  Oh, wait there is an Internist in Fort Smith accepting PASSE members.  As of May 1 Elizabeth will be left without a Pediatrician or a PCP due to the irresponsible legislation of lawmakers who took it upon themselves to make decisions for people they did not even know or cared enough to take the time to get to know and understand the detrimental effects it would have on families across the state in order to salvage their budget.

Elizabeth Forester, age 15.  Diagnoses include: PVL, Hydrocephalus, Epilepsy, Cerebral Palsy, Spastic Quadriplegic, legal and cortical blindness.  She is non-verbal, requires 24/7 care including transporting, positioning, hygiene and feeding.  Elizabeth will no longer have access to medical care unless it is through an ER.  At this time even our children’s hospital hasn’t agreed to be an in-network provider.  Elizabeth will have no one to write her prescriptions for her, medicine that without she will die.  There will be no one to service her internal pumps that without she will die.  Elizabeth will no longer be able to attend school because she requires prescriptions for medications, feedings, therapies and personal care.  The scripts must be from her current PCP which as of May 1 she will no longer have.  Elizabeth’s medical supplies, including her feeding supplies will no longer be delivered because once again a script from her current PCP is required.  This is not quality care, care that you made into law.  It is the very definition of discrimination: the unjust or prejudicial treatment of different categories of people or things.  As lawmakers it is your responsibility to advocate, not discriminate.  All people should take action to freely accommodate people with a physical, mental, cognitive or developmental disability.

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