The Financial Impact of the Opioid “Epidemic” on Autism

The Financial Impact of the Opioid “Epidemic” on Autism

My grandson is a statistic of this fake/false opioid epidemic/crisis due to prescription medications. It is an illicit fentanyl and heroin epidemic /crisis the collateral damage aspect that no one touches on!

My grandson will not have an advocate, meaning myself, that he truly needs. Thus, he most likely will end up in an institution which will be paid for by the state.

One of the most devastating aspects for me has been the fact that I cannot advocate for my autistic grandchild who is my heart, my world he is 8 years old right now, time is of the essence because early intervention is the key. If he does not receive the services that are instrumental for him to thrive, grow and develop skills.

He is 100% nonverbal, on the very severe end of the spectrum. Prior to my medications being cut off, I was very involved in every aspect of his education and individualized education programs (IEPs).

I advocated for my youngest, now 22. He was on the very severe end of the spectrum; however, with the constant engagement and IEPs, battling for services he not only graduated from high school but works now and is a functioning member of society. Everything that they told me he would never be!

My baby has autism and because I do not have access to the essential tools, medications that I need for functionality and quality to my life I am not able to advocate for him to receive the essential services he needs to become the boy, man that God truly intended him to be! The cost Factor is substantial Autism cost-related…

A report released in April by the Centers for Disease Control and Prevention estimated that 1 in 59 U.S. children has an autism spectrum disorder, an increase of 15 percent from the study published two years earlier.

Findings published in Jama Pediatrics report that the lifetime cost for an individual on the autism spectrum is $2.4 million on average when an intellectual disability is involved, and $1.4 million when it is not. It is estimated that 40 percent of people on the autism spectrum also have an intellectual disability.

The organization Autism Speaks estimates that it costs $60,000 on average each year to adequately support someone with an ASD living in the U.S.

Cost obstacles often start before diagnosis.

“Many insurance plans do not cover evaluations. We are talking a cost of $700 to $2,000, just for the initial evaluation,” said Silvia Hierro, who has a son on the autism spectrum and is the founder of SOAK, a Florida nonprofit that focuses on raising awareness about autism and providing informational resources for families.

These costs are factored when the child is in the home and are being taken care of by parents and or Guardians! Because many individuals who have special needs children are losing access to their medications many will not be able to take care of these children that need specialized and intensive care!

The cost will be astronomical!

1 in 59 United States children are affected by autism times the lifetime cost for an individual on the autism spectrum of $2.4 million on average when an intellectual disability is involved, and $1.4 million when it is not…… these are just some costs, of course with the cost of living this will surely go up!

How I came up with dollar amount:

100,000,000 CPP (lower end) of #IPPS #CPPS have special needs or elderly parents they are responsible for taking care of!

1 in 59 children have autism in USA (last study was 1 in 40), but we will use the 1 in 59.

So 100,000,000 divided by 59 = 1,694,915

Lifetime cost for an individual on the autism spectrum = $2,400,000

$2,400,000 x 1,694,915 = $4,067,796,000,000**

-Only one aspect of the collateral damage and costs that can and will occur because our essential tools have been taken from us!

Could you imagine how many children, teenagers with disabilities that will have to be institutionalized because their caregivers/parents are not able to take care of the 1 in 59 United States children???

Cathy Kean

Had I had my medicine, I could have got him the services that he truly deserves as being not only a United States citizen but a human being! He did not ask to have autism he deserves a shot at life!

These staggering costs will be left to the American taxpayer and the economy will feel its DEVASTATING results….

More than cost is in play here because early intervention is the key! Because these individuals will not have the interaction, care, and resources due to the environmental challenges, parent and or guardian unable or being deficient and incapable of taking care of the said child or in compromised fashion due to inability to manage pain the child will suffer numerous consequences physically, emotionally, and intellectually!

Is this humane, is this fair?

They did not ask for these challenges!

Aren’t we supposed to provide them with the best environment and tools to so they can excel and be self-sufficient adults?

How is this being accomplished?

It is not! Quite the opposite…

It’s very detrimental to special needs children! They will suffer tremendously!!!

The collateral damage, which is going to be exponentially worse than anything that has occurred in recent history, will be irreversible and this country will never be the same! Broken families! Destroyed lives! Loss of life! Of livelihood, substandard living will result due to not being able to work any longer!

Social Services will be overwhelmed with children whose parents can no longer take care of them. The family unit will be destroyed as we know it!

Latchkey kids, prisons, Brokenness will be the way the norm!

The American dream, “The white picket fence” will be all but abolished!

And that is just the tip of the iceberg!

All because intractable pain patients do not have the medication that once allowed them to work, to raise a family, to engage and interact in society is now gone!

I should rephrase that!

It is readily available, just not accessible, and not prescribed to us!

How can the governing agencies ignore the suicides due to pain and to all the suffering and not pay attention?

More consequences of these changes will be; physicians will leave pain management practice, throwing thousands of patients into the street without medical referral or support when they go into opioid withdrawal. Many areas of the US States are already no longer served by any pain management center. Potentially millions more patients will be forcibly tapered down or cut off cold-turkey, plunging them into agony and disability when they can no longer work or maintain family relationships due to under-treatment of their pain. More patients will be turned away by emergency rooms and family doctors. Suicides, already on the increase, will soar. Those abandoned will turn to the black market street drugs! What about this is humane?

The cost will be astronomical!

This can, and will, all play out because these medications that were not only a lifeline but our tools so we could be functional and have a sense of quality to our lives! Do we not have the right to have a quality of life?

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Authored by: Cathy Kean

Pain is Pain Page on Facebook Chronic Illness Advocacy and Awareness Coalition Grandmother Fighting For Autism page on Facebook dedicated to my grandson xxoo.

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Kris Aaron

“Dangelldonm” sounds as if they’re an opioid troll who gets their jollies from laughing at people in pain. Obviously, this individual has never lived with severe chronic physical suffering if they can honestly say “…the narcotics turned me into an addict who was out of control!”
Pain is subjective; science has no way of measuring the amount of distress one individual experiences when compared to another. We do know, however, that blaming addiction on narcotics taken to control physical pain is right up there with “The devil made me buy this dress” on the believability scale. Addiction is the result of taking opioids for pleasure, not to reduce pain.
Pay no attention to “Dangelldonm”. He or she is struggling with the kind of serious mental disorder that drives people to kick puppies, wet the bed and set fires in dumpsters.

Dee

Dangelldonm has no idea what you are going through. Just another anti opioid zealot. I appreciate the information you have shared. This shows how many more people are being harmed. So much collateral damage from refusing to relieve pain. Like a stone thrown in water this is having many rippling effects.

Elizabeth

My son is about to turn 5 and was diagnosed with autism. He also suffers from hearing loss. I am his primary caregiver, and if I was unable to control my pain I would not be able to take him to his outside therapies, doctors appointments, and would not be able to assist with his in- home therapies. I would not be able to homeschool him, as we always intended. He already deals with so much, his own issues as well as mine, and I can’t imagine what life would be like for both of us if I lost my (already limited) functionality.

Marianne

Cathy, I just wanted you to know that my heart goes out to you and your beautiful grandson. Your post was very painful to read. I will keep you in my thoughts and prayers. It is insanity what is going on in this country! The government doesn’t seem to care about the impact that their careless decisions have on our lives! God bless you. And God help and protect us all.

DAngelldonm

There is other medication that can help with pain, not only narcotics can help. There are many other healthier choices. Use them and stop using your grandson as an excuse and escape goat to feed more narcotics into your mouth. And before you say I don’t understand what it’s like, the pain etc? I have severe chronic pain and the narcotics turned me into an addict who was out of control! I had to have professional help to get off of them. Because of those wonderful people, I have my life back and so happy. I have better safer meds on board that aren’t addictive narcotics!! I’ve become an advocate to help others realize there are better choices out there. Stop screaming my pills my pills! I can’t live my life! I can’t function! You have no life now, don’t you realize that? You are held hostage by pain pills and counting them every month to figure out how to make them last. You know you finish early and don’t say you don’t. I use to say the same thing!

Valerie Hirschberg

Your letter should to every media outlet possible as well as the DEA, and DOJ. Very well said and true.

Peggy Davis

I hurt so much sometimes I can’t believe it. I couldn’t sleep last night due to the pain.I have Multiple Sclerosis and Fibromyalgia. I have tried other meds but hydrocodone is the only medication that helps me. It’s a shame so many people take advantage of the medication. I don’t see how a person can get high on it. I only take it when I need it but I don’thave an addictive personality (except for Dr Pepper.) There will always be something else to blame for addiction. Drugs can be made other than by pharmacies/drug companies.

Maureen M.

Cathy, First off, I am so sorry for your struggles as a mom and a grandma in regard to both boys’ autism. It sounds like you did an awesome and heroic job with your son! I’m so proud of you!!
And I am saddened to read about how our medical system is failing you to be that awesome Grandma to your darling grandson.
This is yet another very poignant writing of yours and an excellent point made describing how this is yet another damned example of how the CDC, our doctors etc etc has effective and lessened the lives of CP folks. Shame shame shame on them!! I wish I could make it all better for you. Kick and scream to those doctors and let them know how this now effects the life of your Grandson!! Supporting you from afar. Hugs, Maureen M.

sharon l schmidt

It is awful! I never felt so scared. After my doctor got his license taken away I found a merhadone clinic. I was on 100 mgs a day at the clinic it was wonderful.except I had to go everyday and I needed a split dose and I hadn’t workwd up to that yet. I found a pain doctoe that said he would only prescribe 30 mgs a day I said fine I could work with that. He took me down 10 mg every two weeks. It was fast but I was determined. I got down to 30 mgs a day for 1 month now he wants to take me down more. I couldn’t believe it I get there it barely covers the pain. He doesn’t ask me about my pain he just talks about bringing down more. I thought he was a pain doctor I don’t know what to do. I have actually had to go to the streets on 30 mg aday to get pain relief.

Thomas Kidd

I so feel for you Cathy Kean. I understand what is taking place and try to warn people, but most people don’t want to hear or believe it. They control of people’s lives is the plan. We are just now beginning the period called the “The Great Tribulation.” And we who are sick and dying are not important in the plan of the anti-christ. This warning mostly falls on deft ears because spiritual blindness has taken hold on millions and millions in our country and around the world. Empathy and compassion is not in this evil plan of the end times. This is the result of taking the teachings of Jesus Christ out of all things public. Sadly these horrible ideas has permeated the church. No wonder we have reaped what has been sown. Now is a time for preparation. But I understand that it’s not going to be easy for many people. My prayers are with you and your suffering. I to am a sufferer of chronic daily pain. God bless you as you seek Him and His peace and contentment.

Cathy my heart breaks for you. I had a child with severe cerebral palsy & I know all that goes into caring for children who are disabled. I ended up being the only support for my son early on & I learned everything I could about it & was shoved head first into being an advocate. There’s SO much that goes into that alone.

I’m so thankful that I was in my early 20”s with him, before I ended up with extreme pain daily. He would not have progreseed much. It takes a huge amount of energy to care for these kids, both physical & emotional on a daily basis. I couldn’t have done it while in the pain I have now. Nobody else would have stepped up for him.

I know the frustration & I’m sure the guilt & anger you have. They say we are to be so concerned about the families that have lost their loved ones from the phony prescription opiods. But where is the cry to care about the families of those who are the victims of the phon prescription opioid crisis? Families like yours & mine?

I do believe that this phony crisis was a planned deal due to a great deal of research. And while this country is still crying over the wrong drug, the real drug problem gets shoved under the rug. The real victims weren’t the ones who made a personal choice to do what they new was wrong & lost their lives. They made their choice just as we make our choices. I don’t see anything changing till DEA is stopped & kolodney is satisfied with the blood money he’s making off this phony crisis.

May God bless you and your family and keep you all till this is over.

Cindy

Cathy –

I believe you’ve written on this topic before and it is heartbreaking.

And you should continue to write about it, focusing on the macro-economics.

Given that empathy and humanity dont’ seem to register with our govt on the opioid issue, I think focusing on the costs makes a lot of sense.

I’ve posted about the costs incurred when people have to stop working and instead of paying income taxes, are drawing govt disability payments.

Your post about less obvious costs is really important. When CPP’s can’t care for sick family members — elder or younger — society pays. A lot.

I think that these economic arguments are the way to appeal to legislators on the federal and state levels and I thank you for giving me additional arguments to make.

BUT,

I dont’ agree with calling the opioid crisis “fake”.

That term ignores the suffering of the addicts and their families.

Yes, the distinction MUST be made between CPP’s compliant on legal drugs vs addicts OD’ng on illegal drugs, but the ILLEGAL crisis is real. Not fake.

You want to win empathy and support for your suffering. I dont’ think that denying empathy to others is a good strategy for doing so.

I understand the sentiment to call it fake given the harm you and your family have suffered.

I’m a CPP who has suffered horribly under a forced taper, and I used to call it fake too.

But after reading more about the real harm caused to so many families, I can’t do that anymore.

I hope you’ll consider this for your future writings.

Best of luck.

Lori

I agree totally with you. I took care of my father with dementia and multiple problems while I am an intractable pain patient. I was stable on my medications from my PCP for 15 years. He knew I was caring for my dad alone every day. Thank god for those medications! I never could have kept him home until the day he passed away at 88 years of age. I my self have become a burden on my daughtet because the government has seen fit to take away the only medication that allowed me to be self sufficient. The pain communities need to all get together and have our vouces heard in Washington DC. Especially during an election year. The cost not only of money but human casualty is enormous. We need to group, be heard and get some new laws passed.

Well said Cathy! Although, I think you will find that most minorities” have” or “are” already experiencing many of the situations that you have labelled as due to “The cost factor being substantial Autism cost-related”. Whereas theirs is primarily due to the color of their skin, which they also ” did not ask to have” but they too also “deserve a shot at life!”

Please know . Everything you said is true (not sure about the numbers, but I am sure they are as close as you could calculate with the information that you had). I just could not help myself from thinking how much your article could just as easily be equated to minorities.
I must admit part of that could have been from having just watched the HBO special about gentrification of Chelsea, New York. Where they spoke to kids of wealthy parents living in the new $15-20M condos. Rich kids attend the new private “World School” (2008)(at a cost of approx $40k/yr) the minorities who are lucky if (usually, single mothers, earning less than $21k/yr) there is food in the fridge.

EVERYONE DESERVES TO BE TREATED EQUALLY!

Marsha

Cathy, your article struck a chord with me. I have an autistic grandson who is about to turn 20 and is in his second year of college. Not to go into a lot of detail, his mom and dad sacrificed for him to get the speech therapy and occupational therapy. It’s terribbly expensive. My daughter sought all kinds of ways to keep him mainstreamed. But each child is different, on the spectrum. It’s heartbreaking to think of your grandson not receiving the services he VITALLY needs because there is no one to speak up for him, make phone calls, pay through the nose for therapists, get him to appointments, stay involved with IEP’s, etc. You would if you were able. I just don’t understand why anti-opioiders can’t get it, that CPPs function on carefully prescribed medications in a way that other treatments don’t help. It’s that simple. Opioids have been around since the beginning of time. It’s our messed up society that has caused you to lose your former functional life and of all the most heartbreaking forms of collateral damage, your grandson’s advocate. I will remember you in prayers.

LMC

My heart and prayers go out to you and your family. To all the families that are adversely affected by the decisions made by people that have not walked a day in our shoes. The irreparable damage of this so called crisis has far greater implications than the powers that be can even imagine, let alone fathom, so thank you for sharing yours. It is important, that as a community, we are aware of all the far reaching implications of this otrosity.

Even though some backpedaling has began by the CDC it didn’t (and doesn’t) matter. Doctors are still afraid if the DEA. The CDC can’t arrest you and take your assets while they fish for information in a doctors files but the DEA can (and does).

For the few of us that still have access to pain management specialists and some medication, we are feeling the loss as well.

I don’t understand why we (as a country) take the
“Ready,… Shoot, ….Aim” approach, reacting first only to later realize that we should of aimed before we fired.

Jack

Could not have said it better Cathy. You are spot on.

❤️ Luckily our school system allows us to do our IEP meetings via conference call, but that’s not the same as being there. My son just turned 16, and is on the higher end of the spectrum having been diagnosed with Asperger’s before they stuck under the umbrella of Autism.

He could greatly benefit from having me available in the afternoons to go over work that he did not get a chance to do (sometimes he sees his therapist, sometimes the teacher won’t let him type out the work, which is much faster, easier, and more comfortable as he writes with his right hand but holds the pencil with his left). By that time in the day, I need to be in bed with me feet up.

While that may sound nice, it’s really not. Because my lymph system hasn’t been working like it should, I have to try to keep the edema down. I also have stage 4 breast cancer, with additional sites involving my sternum and liver. While treatable, I’ll never be considered “cured”, but I hope and pray for remission.

If something happens to me, it will fall to his father and sister to help him prepare for college. Just because he is super smart doesn’t mean that he doesn’t need services and support!