Joey's Mental Health Recovery Fund
After spending two weeks in a psychiatic hospital in Hong Kong, Joey was transferred to a treatment facility in Ohio called the Lindner Center for Hope. My parents spent the month of February by his side as they lived in a hotel. This has been going on since early January and his condition progressed rapidly.
Last week he was transfered to a long term facility in Tennessee at the recommendation of his doctors. This will be a very long process for our family as this is a life long diagnosis that will require constant care, treatment and attention.
You may not be aware of the significant cost of mental health care in the United States for such a diagnosis, and neither was I. The Lindner Center for Hope costs $19,500 for just ten days. Pasadena Villa, where Joey is now in TN, will cost over $25,000 a month and Joey will likely have to stay for a minumum of three months. After this time we still don't know how long it will take for the medications to be effective or what will be the next steps.
Anyone who knows my mother and father knows that they are some of the most generous and caring people you will ever meet. They fill the lives of others with so much love and support and they deserve the same, especially in such a difficult time. They constantly go above and beyond helping those around them in whatever way they can. My parents have done tremendous things to promote STEM education and they have encouraged so many people to get involved in the Maker Community throughout the years. My brother and I have been fortnuate to experience this firsthand. As their daughter, I only hope to be able to give as much support in return as I have always received from them. I am aware of the finacial toll this has had on my family and I am hoping that you can help lessen the burden of this unforseen financial hardship.
Any funds received in excess of those needed for Joey's treatment will go to helping other families in similar situations.
My family really appreciates any help you can provide - financially and through your caring thoughts.
He needed about 3-4 months more at the Recovery house in CA.
We've been working to find good Dr.'s to continue his care. Joey really likes his Dr.s in CA, so this may be challenging.
We are hopeful that everything will work out.
I hope us sharing this has brought more attention to Brain Disease, and the cost associated with it.
Please talk to your children about marijuana. Marijuana is what triggered Joey's Schizophrenia. Of course this doesn't happen to everyone...We never thought it would happen to us. Know the signs and keep an eye out.
The same message goes for Opioids.
The Hudy Family
The conference was about Parity Laws. Realizing justice for those with addiction, eating disorder and other mental health challenges means equal access to care and fairness when it comes to insurance coverage. Despite strong federal and state laws requiring both, millions of people are being denied the treatment and health coverage to which they are entitled. When a plan has parity, it means that if you are provided unlimited doctor visits for a chronic condition like diabetes then they must offer unlimited visits for a mental health condition such as depression or schizophrenia.
We spoke of our trouble getting our Insurance to follow parity laws. Claims are processed and reprocessed, how we have to submit our own claim and get less than half returned to us. etc
Spending 300/hour for Dr and getting 75.00 refunded to us.
On a positive note - I fell like we did a good job. During our story there were a lot of tears from us and the audience. We were greeted with a lot of hugs after, and thank you for telling our story. Mr Patrick Kennedy was very supportive to us.
The sad truth of this is that we don't have any money left. We are at a very scary crossroads. Joey isn't ready to leave his facility...but we have no choice. This happened to a lot of families. A lot of Schizophrenic will come home and have another psychotic break and or end up in jail. Of course some do ok, but thats when they are ready to return home.
I remember when our daughter started this GoFundMe I wanted to make sure that any money left over would be donated to other families. Sadly all I can do is give support and advice. Clearly I had NO idea of this journey.
Victor-Michael Phelps-Me-Patrick Kennedy and Amy Kennedy
Everyone of you have been a special apart of this journey with our family.
We want to send out wonderful cheer for a great New Year to all of you.
Update on Joey.. He was able to come home for Christmas for 2 days. It was a nice visit.
Victor and I will be traveling to Chicago later this month. (brrr) We will be speaking at the Kennedy Forum about our experience this year. Travel, facilities, cost, treatment, insurance etc.
This system needs to change.
Happy New Year.
Knowing that at least 80% of Schizophrenics can't hold down a job is a huge pill to swallow. It's not because they don't want to, they can't. The brain damage makes it far to challenging for them.
Truth of the matter is Joey has brain damage. He will start intense therapy for help strengthen and rewire his brain.
It's important to keep him busy, stimulate his brain a bit and keep him on a schedule. We are looking for places for him to volunteer and maybe a very very low stress job.
We will continue taking our baby steps, they lead to the same place as larger steps, just takes a bit longer. We will get there!
Thank you for your continued support.
My brother has lived with schizophrenia for the past 17 years. I started Partners for StrongMinds, a nonprofit that connects young people to early intervention treatment for psychosis. Comprehensive early treatment programs have a 20+ yr history of evidence behind them overseas and are now spreading throughout the U.S. following a large, successful NIMH trial of these programs that wrapped in 2015. There are a few new programs offered in AZ - please check them out and let me know if I can help. http://strongmindsproject.org/get-strong/find-help/ I know how hard it can be to support someone in these early stages. There is so much hope for recovery, especially if he is able to get high quality, compassionate care right away. I am happy to support in any way I can. My very best to you, Chantel
I hope the best for your brother. As a maker, engineer, and patient diagnosed with a psychotic disorder who has recovered significantly -I'd encourage your family to consider the option of community based rehabilitation rather than residential facility if your Brother's behavior allows it. Recovery takes significant time, and it's no joke that recovery begins at home.
Please apply for Social Security Disability/Medicaid (while still possible) for this young man as soon as possible to get him access to necessary medical, and other needs, and also to protect him and the family financially. According to SSA, schizophrenia is the second most disabling condition, and he should be accepted immediately.
Elizabeth, read the Wash Post story. Very sorry to hear. I don't know if your family knows about the Natl Alliance on Mental Illness (NAMI) www.nami.org. They don't offer financial support, but can be helpful in other ways with information and, support. There's a NAMI Tennessee office in Nashville and local affiliates around the state in case they need local advice, networking, etc. http://www.nami.org/Affiliate?state=TN. Hang in there.
Somehow I am trying to get to the parents of Joey, Julie and Victor Hudy. I am requesting that they have Joey tested for a neurological condition know as Voltage Gated Potassium Channel Antibody.(VGKC) It is a rare condition that presents itself with paranoia and schizophrenia like systems . I, for one had this condition and recovered from it. I am also referring you to a book by Sussanah Cahalan, Brain on Fire. Thank you and my best to your son.
after you do the front end work ssa does all the investigation. it is worth a try. there is a wide variety of what will be paid for and he will get medicaid which *at this point in time* pays for almost everything. he will also get a monthly payment for living/other expenses. it could help him get better, there are jobs programs to get him on the right track, etc. it will cover medications. it doesn't have to be a life long sentence.
it is great that you are raising funds, but for long term sustainability I highly recommend he apply/or you apply for him, for social security disability. it can all be done online. you do not need a lawyer as is the common perception. https://www.ssa.gov/applyfordisability/
I saw your story about your son joey on 12 News. There are genes associated with mental conditions such as the one your son has. There is a doctor in Scottsdale that does a special epigenetics test (it's a cheek swab) that can give information as well as possible supplimentation that could possibly assist in allow Joey to have a better quality of life with less medication. When we have genetic anomolies our bodies and brains need help. Supplementation and diet can play a huge role. In case you are interested in pursuing this avenue, the doctor's name is Courney Hunt MD . Her practice is Wellness of both male and female patients and her office number is 480-970-1937. Perhaps call her, give her details and she will be able to tell you if she feels she could help. Dr Hunt has helped me personally a great deal and I have all the faith in the world that if somoene can help you, she can. Hope this helps, Lovingly, Jenny
I wish I could help out financially but I can't do that. I can say that I know how your family feels... my son has been down this same road. It's not an easy journey and I learned early on that I could only walk with my son... at the end of the day I could leave and go home- he stayed in those shoes every minute of every day and night. My son was 10 when he was officially diagnosed and our walk lasted many years. Please, as soon as your brother is stabilized on meds and his behaviors are stable I encourage you to get him out into the community as much as you can and as soon as possible get him out of the institution and back into some family type of living situation. It may not be at home, it may be in an adult assisted living home... but with rehab services available he can work and continue his STEM activities and that will all go towards his recovery and stabilization. My heart and thoughts are with you all- sending white light and positive energy for healing and strength!
Please help this family! My son, now 24 is a schizophrenic. All was well until he was 20 then it happened with no warning. He has been in 2 treatment facilities for a period of 13+ months and has been receiving psychiatric and psychosocial therapies as well as seeing a LCSW/coach at home to support his everyday living. All cost me well in to the $300,,000 + range and is ongoing... We are forced to sell our home and to cut back drastically on our plans for retirement. Most of my day is making sure all goes smoothly for my son and dealing with our uncooperative insurance company. It is heartbreaking to have one son, then the next day have a whole other person you've never seen before. It's so scary to not know what, if any recovery may be possible and there is so little funding for mental health. I will be holding the Hudy family in The Light.
Once again, I beg you to have Joey tested for VGKC - it is an encephalitic type condition which causes the paranoia and schizophrenia in people. It is treatable and he may be able to recover 100%. There is a book called "Brain on Fire" which details this condition. I know as I also had this condition. Thanks
Although there is no cure for schizophrenia as a psychology major I can assure you that the medications will lesson his symptoms once they figure out what levels he needs. I fully undersrand the financial stress this can cause as it does take time to get him on the correct dose. I am prating for yoir family and hope my gift helps your family. Please place your faith in God because above all therapies and medications he has control and he will answer your prayers.
How old was Joe when diagnosed? There are many programs that can assist with his care. In AZ, he would qualify for ALTCS (Az Long Term Care) which would cover the costs of his housing and much of his care. In TN it's https://www.tn.gov/aging/topic/long-term-care-ombudsman Please also sign him up ASAP for Social Security Suplemental Security Income (SSI) which will automatically entitle him to Medicare coverage My prayers are with your family
My son Timothy was diagnosed with childhood onset schizophrenia at age 11. My heart goes out to your entire family. This disease is a family disease! Tim is 22 now and stable, but it took 4 years of residential treatment during his teenage years to get him stable. Please know that you aren't alone. I am part of a support group on facebook for parents of children with severe mental illness. If you need to vent, it's a closed group, and we all understand what you face. Feel free to join us if you need to talk. https://www.facebook.com/groups/144622772289553/
Hi, My prayers for Joey and his recovery. Have doctors looked into PANDAS or Autoimmune Encephalitis? It is when the immune system attacks the brain, causing neurological and/or psychiatric symptoms. These are brain diseases that can cause/mimic symptoms of Schizophrenia, especially Hashimotos Encephalopathy. My oldest child was 7 when he began experiencing psychiatric symptoms and was found to have many chronic infections and PANDAS. Testing is available for PANDAS antibodies through Cunningham Labs, and Athena Diagnostics has an extensive panel of CNS antibodies that can rule out different types of Autoimmune Encephalitis. Many chronic infections such as Lyme Disease, Bartonella, Strep and Mycoplasma Pneumoniae will cause symptoms of mental illness and hallucinations/delusions also in later stages. Please don't give up. Find a doctor who will find a root cause and treat. His life depends on it.
Thank you so much for sharing Joey's journey with us, and for the update. It's evident that making was just one of Joey's passions. His photography is moving. Maybe he'd consider selling prints? I love the fountain. Thanks again for sharing, it's wonderful to see Joey's growing interests. Love to your family!
I don't know your family and can only imagine what you are going through. Please consider rtying alternative, non-traditional medicine. Chinese medicine heals a lot of diseases including mental. It is not an easy road and it is a long process, but it is worth trying. Wishing you all the best!
Proof that Obamacare is a failure. Good luck with your diagnosis, I have a close friend with this condition, he is doing well a few years later having stablized on his medication living off social security in a subsidized home and insured by Medicaid. God Bless! Sorry I can't afford to donate, my taxes are already too high this past year.
Please support my GoFundMe campaign: depression to progression, BPD to PhD I have had a difficult time with my mental health recently; anxiety, bpd and depression . I would greatly appreciate it if you would take the time to view and share my campaign. I want to become a scientist but I won't be able to get to uni if I can't gain my alevels first