What Do We Want? (See Below) When Do We Want It, 2000!
What are our community's priorities in 2026?
…To do all the things that should have been done at least 26 years ago.
After much consulting with my constituency, I have narrowed down the list of things that we would like addressed to a mere list of 166 points.
I have further pared that down to a digestible, categorized, two pager:
Prevention
-Vaccines
• Hold vaccine manufacturers liable again
• Vaccine-Specific Reactions
• Differentiate between autism and vaccine induced encephalopathy
• State Medicaid waiver use after vaccine injury
• Open access to vaccine safety databases.
• Education for doctors: Make them read the vaccine inserts and VICP table.
-Diet
• Diet while pregnant (standard American diet vs. Weston Price type diet or organics)
• Brain protection potential of vitamin K2-MK4, D3 and vitamin A in cod liver oil
Diagnostics
• Autism biomarkers for diagnosis in to sub categories of Autism.
• Restoring the DSM to its pre 2013 functional status regarding diagnostic criteria of autism.
• Evaluation of MTFHR Polymorphisms, Glyphosate toxicity, and microbiome ecology.
• Diagnosis and treatment of whole body apraxia. This apraxia changes the definition of what we thought autism was. What has been described as “behavior ,” for years, is a brain-body disconnect they cannot control.
• Regression in adults with autism
Medical research
-Co occuring conditions
• PANS, PANDAS, autoimmunity and neuro-inflammation, mitochondrial dysfunction, toxicities, oxidative stress, parasites, mold, viruses, bacteria, heavy metals, insecticides, cumulative toxicity,EMF Sensitivity, adrenal fatigue, Vagus Nerve involvement, acid in food and cerebral folate deficiency, and Cell danger response .
-Treatments to research and implement accordingly
• We need facilities that actually TREAT for autism, etc... inpatient - medically, integrative approach - treat the underlying cause rather than just throwing psych meds at them and locking them up in facilities.
• Various dietary and nutritional interventions.
• Research on THC, IV platelet therapy, Sequential amino acid modulation injections not yet approved in USA, Suramin, Ketamine, Clozapine, antivirals for autism, probiotics, methylation, Stem Cell treatment, Homeopathy, MrtRed light therapy, Hyperbaric oxygen therapy, Micro-current Neurofeedback, Gcmaf, chlorine dioxide, effective safe heavy metal detox methods, Vitamin and mineral replacement like mB12.
• The impact of food, sugar, food dyes, preservatives, pesticides, oxalate, processed food
• biochemical pathway of OCD
Support Services
• Alternative Communication + Nonverbal Intelligence- Study the efficacy of, visual-symbol systems, spelling boards, AAC tech, and other flame-based modes
• “We need homes for our adult children once we’re gone. We need activities and a life for our adult children.”
• Presuming competence in this population!!! They are ALL in there – trapped!
• Compensation. “I need vacation from advocating and crying.”
• Improved communication between parents and the federal system
• Each of our children needs their own different schooling that can teach them accordingly.
• Track And support mothers who are having strokes, heart failure, Cancers, assault injuries and PTSD.
• End the medical neglect our kids suffer at the hands of medical professionals.
• Classify autism as a medical disorder instead of just a developmental disorder, let the systems open for insurance reimbursement, medical treatment and research opportunities.
My son is 29 years old and he was harmed into this world of profound nonverbal autism by an MMR vaccine. What has been most important to us has evolved over the decades and I can say your list is fantastic. I'll only add that since my son has been an adult, we have needed compensation by Merck to fund what he must have to live on this earth after his traumatic injury. Indiana Medicaid is constantly cutting resource dollars and has next to nothing to offer here in our rural farm town. I lost my nursing job because we can not keep any staff (who does this type of work for $12/hr-$17/hr)??? I'll tell you who. The parents. So what do the reps of Indiana do when only family will care for their loved one? Limit the amount of hours they will pay you. A stranger gets paid for hours worked UNLESS that staff is genetically related to the client. Then you must care for them for free after your shift ends. I am a single mother as I am the only one that has stayed around. I do not have a spouse or other to turn in hours for me. I have begged the state of Indiana BDS office to just pay me for my hours worked without holding my genetics against me since the state service providers could not find nor keep competent staff. They refuse. This has to be discrimination against my genetics. My son can not help he is profoundly brain injured and staffing shortages is huge and a number one issue across Indiana for all waiver participants, but, especially critical for the profoundly brain injured. We need representation to stop the discrimination based on our genetics when we are the only staff that sticks around and takes excellent care of waiver participants. I must add that the state expects family to provide the natural nonpaid supports which I do all the other hours of every single day. What I am at odds with the state is that if they pay other staff for 12 to 16 hours a day, then pay all staff for that time as well. That still leaves family (just me in my sons case) providing 8-12 hours of unpaid natural supports a day. Single parent families can not make it on such a low hourly salary for 40 hours a week but they must work every hour of the week limiting them to find other substantial employment. I am held hostage by "autism" and the state. If I walk away, my son gets institutionalized which is not his best life. Also, my son's budget allowed for nearly 24 hour a day care. The budget monies are there. The state just will not allow my son to utilize his budget because the only staff that stays is genetically unacceptable to be paid for hours worked by the state of Indiana. I want to share this because parents of younger children have not experienced this yet and us older more seasoned parents are doing our best to blaze a trail for all families. We appreciate you Ginger! May God bless your work and keep you in His Almighty care. Karmen Wagler RN, BSN
Perfect list!!
Lets get er done!!
Its all just basic common sense.
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