Mt.10:11-20 11Whatever town or village you enter, look for a worthy person in it, and stay there until you leave. 12As you enter a house, wish it peace. 13If the house is worthy, let your peace come upon it; if not, let your peace return to you. 14Whoever will not receive you or listen to your words—go outside that house or town and shake the dust from your feet. 15Amen, I say to you, it will be more tolerable for the land of Sodom and Gomorrah on the day of judgment than for that town. 16 “Behold, I am sending you like sheep in the midst of wolves; so be shrewd as serpents and simple as doves. 17 But beware of people, for they will hand you over to courts and scourge you in their synagogues, 18and you will be led before governors and kings for my sake as a witness before them and the pagans. 19When they hand you over, do not worry about how you are to speak or what you are to say. You will be given at that moment what you are to say. 20For it will not be you who speak but the Spirit of your Father speaking through you.
Is.49:25 Thus says the LORD: Yes, captives can be taken from a warrior, and plunder rescued from a tyrant; Those who oppose you I will oppose, and your sons I will save.
"Public Education is a right, guaranteed by Federal Law, not a privilege; however, it appears “people of privilege” have been making serious attempts, and have so far been successful, in denying my son his rights for a Free and Appropriate Public Education in a Least Restrictive Environment. I expect this matter to be investigated and I expect some answers.” - G.R. Miller in a letter to Carmen Fariña - New York City Schools Chancellor
If you haven't read my letter above to Carmen Fariña - New York City Schools Chancellor, please do. It not only typifies the struggles of a single parent raising a person with autism, but it also testifies to the difficulties my son, and I have endured living in the Tri-state area. Most of our challenges come from my previous employment with a fossil fuels energy company in Houston, TX, that I reference in my letter to Ms. Fariña and discuss in my book, TRIBULATION BY G.R. MILLER.
But first, I'd like to describe a typical day in our household.
It’s 6:00 a.m., the iPhone alarm goes off on the mobile computer desk next to the couch and in the next room. Our Siberian Husky, Isaac has already let me know that its time to go out and pee. He’s 12 years old and just like elderly humans; incontinence is creeping in. I rise from the warmth of a sleeping bag on a comfy couch, my bed since we moved into our new home on July 1, 2017. The distinctively pleasing smell of cooking from my neighbors typically floods the hallways of our building, and the heat from their ovens, along with an uninsulated steam pipe in our bathroom, keep the temperatures up in our Kensington, Brooklyn apartment. The dishes are overflowing in the sink, the towels top our woven bathroom hamper and yesterday’s clothes, mainly pants and polos (cold-water wash) are on the kitchen floor across from the washing machine, waiting to be the next load. Fortunately, we are in a newly renovated apartment that’s rent-stabilized. It was a one bedroom that now is a two bedroom, but has a new small washer dryer in-one and small under-sink dishwasher. They are life-savers, but a wash dry cycle for a small load of clothes typically takes about 4 hours. We gave up at least 500 square feet in our move, so my room is storage for my bedroom furniture and boxes. I rent space for the other 100 cubic feet of boxes. My parents passed away in October 2007, and I just couldn't separate myself from my memories of them...I cling to their old yearbooks and boxes of family pictures going back to the 1950’s.
The door to the other bedroom opens, and out walks a 6ft. tall, 19-year-old handsome young man, made in my image. It’s pretty much the same meal preparation every morning: 2 hard-boiled eggs or turkey sausage or turkey bacon. For lunch, two turkey franks (no bun) or Tyson thoroughly cooked Panko Chicken nuggets. He refuses to eat in the school cafeteria of any school. If you’ve had the opportunity to watch the movie “Rain Man” and you have a child with Autism Spectrum Disorder (ASD) you certainly see the similarities. TV shows are scheduled at specific times from the Boomerang, Nickelodeon, Spike, and Syfy networks or on his DVR. Anything related to Charlie Brown must be watched during the holidays. No green vegetables are on his menu, other than pickles and jalapeño peppers. His diet consists of a whole lot of crispy, crunchy fried foods, pizza, turkey franks (with bun, mustard, ketchup, pickles and jalapeños at home), fried turkey breast, the occasional hamburger and Subway sandwiches where he dictates every detail of the preparation to the employee behind the counter. In late September, we attended a street festival in Venice, CA and I was stunned to see him order and devour a BBQ chicken sandwich. Don’t get me wrong, I very much care about my son’s diet and accept that he's very picky, so I’ve learned to prepare Southeast Texas cooking for a picky eater. Investing in a MASTERBUILT Deep Fryer does the trick. This electric monstrosity can wipe out an undersized breaker box and deep fry a 20 lb. turkey for Thanksgiving. Fortunately, COSTCO sells huge containers of soybean oil, so we diet on chicken tenders and fries, fish and fries and the occasional fried turkey and fries. Bottom line is this…my son's as "healthy as a horse," still growing and he keeps a voracious appetite.
My son, John, is My Penance...My Cross I Bear...My Blessing. He humbled me when I most needed to be humbled, and I have to "fight like hell" so he may have some semblance of quality of life as an adult.
John came to live with me in August 2009 after his mom informed me that either I would take him, or she'd put him in a “home.” We had divorced in early 2005, and she remarried two months before the "ultimatum." It appeared the new “hubby" from Queens, NY (who sounds just like Donald Trump and is just as condescending on the phone) didn’t seem the like the echolalia (self-talking) of an 11-year-old child with Autism. John is now “persona-non-grata” in their Katy, TX home.
John is named after his great-great-grandfather, his great X 4 grandfather and his great X 5 grandfather, who arrived on America’s eastern shores as a German Hessian Soldier during the American Revolution. Interestingly enough, my son also possesses the name of the 1980’s fictional "spokesperson" for Donald Trump’s phone calls made to the media.
The journey of an autistic person begins when you the parent see signs that your child is not as their peers. You get the standard “well; boys develop slower than girls.” Finally, you convince his pediatrician that he has significant delay. It’s followed by audiology tests and an EEG. Once hearing and brain abnormalities are ruled out, comes a prescription for further testing at a hospital specializing in neuro-developmental delays. In my son’s case in 2001, he went on a waiting list for approximately one year because of the ever-increasing incidence rate of autism. In 2002, it was 1 in 150 children who were considered to fall somewhere along the autism spectrum. It rose 57% from 2002 to 2009 to 1 in 110. In 2016, the Centers for Disease Control's Autism and Developmental Disabilities Monitoring (ADDM) reported that approximately 1 in 68 children in the United States had been identified with an Autism Spectrum Disorder.
Speech, motor, and cognitive tests began at Texas Children’s Hospital in September of 2002. Finally, they performed an ADOS…the acronym for Autism Diagnostic Observation Schedule. That confirms your suspicions. You never forget the date that a developmental pediatrician tells you that your child has autism…Sep. 25, 2002. Relatives tell you that “he’ll probably outgrow it,” but you know better. Your parents question why your son is going into “meltdown” when he's hungry or thirsty and can’t tell you. They think its a behavioral problem. The diagnosis is when parenting skills truly “kick in.” You’re either proactive, or you shouldn’t have chosen to be a parent in the first place. In my case, our net worth had just topped $1,000,000. I was considered a “key employee” with an energy company in Houston, and I was on my way out the door for challenging the owner about what federal law considered to be unlawful behavior. I questioned his behavior. Nevertheless, after a terrifying two weeks for my son in the local PPCD (Pre-school Program for Children with Disabilities), I enrolled him in the Westview School, which is a school for high functioning autistic children located on the west side of Houston. It was expensive but certainly worth the money. Early intervention and program development, particularly in “high functioning” cases, are the keys to progress throughout the ASD person's lifespan, with the hope that this person can someday live an independent life or at least a life with minimal supervision. Below is the weblink to the Westview School:
In 2002, we were referred to a social worker at Texas Children’s Hospital, who couldn't provide documentation or resources to assist in dealing with the financial impact of raising an autistic child, who would one day become an autistic adult and still be financially dependent on one or both parents.
The bulk of childhood costs are in special education, medical services, and lost parental income. During adulthood, the highest costs are related to residential care and lack of employment. Previous research (/science/science-news/top-ten-lists/2012/mounting-evidence-critical-need-adult-transition-support), also supported by Autism Speaks, has shown that adults with autism have higher difficulty finding and maintaining employment than do individuals with any other developmental disability.
In 2014, Autism Speaks estimated that the lifetime costs of caring for an autistic person averages between $1.4 million to $2.4 million: $2.4 million when autism involves intellectual disability (ID) and $1.4 million when it does not, and the annual cost to the United States is an estimated $236 billion. An estimated 40 percent of individuals with autism also have an intellectual disability. In my case, John has an IQ that has been measured between 62 and 70. His social maturity, based on teacher feedback and my observations, is at the elementary school level.
Michael Rosanoff, Autism Speaks associate director for public health research concludes that because autism severity is a main driver of costs across the lifespan, the key to reducing costs may be better access to quality early intervention, “These interventions have been shown to improve functioning and have lasting, long-term benefits with the potential to improve lives while reducing lifetime costs.”
Dr. David Mandell was the senior researcher for the Autism Speaks study and directs the Center for Mental Health Policy and Services Research at the University of Pennsylvania. Mandell focuses on the critical issue which plagues parents of children with ASD. “Having an accurate estimate of the economic cost of autism has great implications for service and system planning. The fight to make high quality services available for individuals with autism has often been a debate about how expensive these services are. My hope is that the results of this study will show that the cost of caring for individuals with autism may be less than the cost of not properly caring for them.”
Lost parental income is of particular concern. “This makes it imperative that we examine how high-quality intervention can help allow parents to stay in the work force,” Dr.Mandell says. “It also suggests we need policies that make the workplace friendlier to families of children with disabilities.” Mandell also emphasizes the implications of the high cost of adult residential care. “The fact that so many adults with autism are living in residential homes may represent a failure of our society to provide options that integrate these individuals into their communities.”
In an accompanying, JAMA Pediatrics editorial, Paul Shattuck and Anne Roux of Drexel University wrote:
“For families, an autism diagnosis can also mean a lifetime of absorbing many of the financial and care-giving burdens associated with the disorder, especially in adulthood when the availability of societal support diminishes. For nearly seven decades, evidence from the Framingham Heart Study and other longitudinal studies has laid the foundation for our contemporary understanding of the epidemiology and treatment of cardiovascular disease. We need a Framingham Study for autism spectrum disorders, especially to track risks and outcomes into middle and later adulthood.”
With research funding (http://science.grants.autismspeaks.org/search/grants/factors-related-young-adult-outcomes-autism-spectrum-disorders) from Autism Speaks, Dr. Shattuck has pursued research into the factors that promote successful outcomes in adolescents and young adults with autism. See his, and Ms. Roux's Autism Speaks blogpost: Costs of Autism: A Call for a New Mindset of Investment and Innovation (/blog/2014/06/10/costs-autism-call-new-mindset-investment-and-innovation).
The problem in 2002 was the lack of data which could project lifetime costs. We now have at least some data, based on 2011 cost estimates. The following data, which is separated for both the United States and the United Kingdom is from the JAMA study.
Table 2: Number of UK and US Children and Adults With Autism Spectrum Disorder and Mean Annual Cost per Individual
Table3: Mean Annual Costs per Capita for Children (0-17 Years of Age) by Level of ID, Disaggregated by Cost Component
Table 4: Mean Annual Costs per Capita for Adults (≥18 Years of Age) by Level of ID, Disaggregated by Cost Component
So if you’re a U.S. resident in 2018, and you have a 3-year-old child who has just been diagnosed with ASD and an Intellectual Disability (ID), the calculations below are based on raising that person until their 21st birthday when they're no longer eligible to receive public education based on the Individuals With Disabilities Education Act (IDEA) and are no longer living at home, yet receiving SSI and Medicaid benefits. I developed the below tables by extrapolating the data above at an inflation rate of 3% per year.
“*” Cost assumptions:
3% annual inflation rate.
John was enrolled at the Westview School from November 2002 to May 2009. From the above weblink, Westview's current tuition, which includes educational supplies, books, workbooks, equipment, snacks and field trips, is:
Westview is on a nine-month calendar school year; therefore, tuition per month is approximately:
The last monthly check I wrote to Westview was about $2,600 for Elementary School; therefore, tuition has increased by about 14% over eight years, and that's an annual increase of about 1.7% per year.
Comparing that basis to the above table for ASD Individuals with Intellectual Disabilities, and using the criteria as being a Houston resident in 2018 and you have a 3-year-old child who has just been diagnosed with ASD and an Intellectual Disability (ID), you're tuition cost at Westview from diagnosis through Middle School will be approximately $330,000. Your options are limited in Houston if you want to continue private education for your ASD child through high school. Based on what you can find on the internet, three high school programs exist, and only 1 offers services through age 21. Tuition information for these is not available on their websites and is usually needs-based. Therefore, "mainstreaming" your child into public education after middle school, may be your best choice if you're fortunate enough to be located in a school district which offers quality special education services. Also, mainstreaming offers your child the benefit of being exposed to neuro-typical children. The downside to that is your child may be exposed to bullying.
Seven years and two divorces later, I “mainstreamed” John when he came to live with me. That’s when the real journey began, both for John and me. I was fortunate enough to be living in the Cypress-Fairbanks Independent School District, which by word-of-mouth, is the best district in the Houston area to provide a quality special education program. My son was still terribly bullied there, for several weeks while riding the school bus with general education (GE) students. In your Individualized Education Program (IEP) meeting, make sure you request special education specific transportation if your district provides it. Your child will have a smaller bus with an aide to assist with pickup and drop-off on, and monitoring during transport.
U.S. News and World Report ranks high schools in the above link, but not special education, and a high-quality general education program does not necessarily translate to quality special education, as my son and I found out at Chappaqua Central School District in Chappaqua, NY. We moved to Westchester County in June 2015 when Horace Greeley High School was rated #19 in New York High Schools and #145 in National Rankings With Westchester County's proximity to New York City it offers households with jobs in the city to have the benefit of a public school with the academics of a private school. Their transition services involve vocational (BOCES) programs in Northern and Southern Westchester County which are suitable for both special needs and general education students; however, even though John's Individualized Education Program (IEP) recommended that he receive a vocation training in TV /Radio field, he was placed in Office Skills. Transition services are a requirement of high schools by the Individuals with Disabilities Education Act (IDEA), beginning when the special education student reaches the age of 16.
We lived in New Canaan, CT for three years, from 2012 - 2015, and they provided, what I consider an excellent program. New Canaan High School is currently rated #7 in Connecticut High Schools, #76 in STEM (Science, Technology, Engineering & Math) High Schools and #464 in National Rankings, .
The main criteria you want from a special education program in the public school setting is a low STUDENT to TEACHER RATIO.
Fort Hamilton High School (FHHS), where John was enrolled for the 2016 - 2017 school year, is one of the high schools of NYC Department of Education, District 20 in Brooklyn, NY. It is rated #190 in New York High Schools and #2404 in National Rankings. We moved from Chappaqua to Brooklyn, so I would have better access to New York City, driving for UBER and Lyft, rather than commuting. FHHS is a high school with an enrollment of approximately 4400 students and is a four story building full of classrooms. It can be overwhelming to a special education student, not only in size but also in the curriculum. During the 60 day period of John's evaluations, (which are typically performed when entering a new school) John's general education classes were Algebra, EMT Training (I still can't figure why he was assigned that), English, Health and U.S. History. We would spend hours at night doing homework, causing a reduction in my work hours. Having a B.S. in Civil Engineering, I have a strong math background including college courses in Functions of Coordinate Geometry, Calculus I & 2 and Linear Algebra/Matrix Theory while maintaining an overall 3.5 GPA. I graduated in 1983, and I had to relearn Algebra in 2016. I had to complete all of John's homework and had it not been for the Khan Academy online, both of us would have failed the class.
In New York City, high school special education students are placed in a 15:1 student to teacher class setting with a General Education (GE) curriculum as I noted above. GE classes document performance during the evaluation period; however, students with Intellectual Disabilities, without a Teaching Assistant or Paraprofessional in the classroom, are destined for failure. Once the NYC Dept. Education, specifically the IEP Team determines that the 15:1 setting is not suitable, that student is transferred to what is known as District 75. Below is the web link. His STUDENT to TEACHER ratio in a classroom setting was reduced from 15:1 down to 12:1:1, meaning the new setting would be 12 students to one teacher and adding a paraprofessional.
First, my son was diagnosed with "High Functioning Autism," "Pervasive Developmental Disorder - Not Otherwise Specified" (PDD-NOS) and "Encephalopathy NOS." Encephalopathy is a term that means brain disease, damage, or malfunction. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) combined those diagnoses as "Autism Spectrum Disorder" (ASD). John gains more independence as each year passes. He may never live independently, but he certainly qualifies for living within a community environment with minimal supervision. John "bristles" at any suggestion that he has ASD, specifically the word "Autism," so it's difficult to put him in an education setting of more severe cases of Intellectual Disabilities than his. He wants to be mixed with neuro-typical students, which is not uncommon. The purpose of the Individuals with Disabilities Education Act (IDEA) is to provide a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). In my opinion, the District 75 setting can be counterintuitive to the purpose of the act. In my son's case, the large school he was assigned to, P373K - The Brooklyn Transition Center, was a blend of both high-function and low-functioning students with an assortment is Intellectual Disabilities. To me, that's not FAPE for high-functioning students who view neuro-typical students as their peers; therefore, it's not "Least Restrictive" but "Overly Restrictive". It's an effort by the largest school district in the United States, by enrollment, to distribute their federal funding for Special Education more to the overall district's benefit than to specific benefits of their Special Education Students; thus, restricting vocational education opportunities for higher-functioning students. That was John's case which I broadly detailed in my open letter to Carmen Fariña, New York City Schools Chancellor.
IDEA Funding requirements are described in 3 below weblinks.
The roadway to caring for an autistic person is fraught with potholes, roadblocks and hairpin curves, not only with education but also with lifetime care planning and disability benefits. Be ready to be taken advantage of, be it the Local Education Agency (LEA), people you hire to fight for your child’s rights (advocacy), develop lifetime care plans or the Social Security Administration. We’ve been through the “ringer” with all 4. Going into a new school district, you’re child needs to be reevaluated. Make sure you get a copy of the evaluations so you can contest the findings using an outside professional if need be. The process typically takes 60 days and based on the assessment; the public school is required by federal law to develop a Individualized Education Plan (IEP) for your child. 4 words: Hire a parent advocate.
Abraham Lincoln once said; “He who represents himself has a fool for a client.” The same can be said about a parent, unfamiliar with their disabled child's rights, who tries to best represent that child in an IEP meeting. The deck can be stacked against you, depending on the quality of the school district. IDEA gives the right for you, your child, and at your discretion, "other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate" (parent advocate) to be invited to an IEP meeting. Your child's future into adulthood may very well depend on advocacy.
I've had the blessing of a great advocate while living in Cypress, TX and the horror of a terrible advocate in New York City. The person in Texas cost me $150.00. The New Yorker and the firm she worked for, tried to charge me $750.00. After the IEP Meeting, I refused to pay for the advocate. A parent does not want to take on a school district alone if the district is attempting to diminish your child's rights which are guaranteed by federal law. Couple that with an entirely unqualified U.S. Secretary of Education, Betsy DeVos (an individual with little public education experience, who didn't realize that IDEA was federal law, rather than discretionary state law, and has promoted private/charter school education over public, regardless of quality), you'll get little or no help from the U.S. Department of Education. On October 2, 2017 (my 57th birthday) Secretary DeVos and the Department of Education eliminated the following 72 guidelines from IDEA by President Trump's Executive Order 13777 signed on February 24, 2017, which requires federal agencies to review all existing regulations; identify those that meet specific review criteria; and make recommendations regarding leaving them as is, or recommending their repeal, replacement, or modification. By my count, they eliminated five guidelines that dealt with Transition Service, Post-Secondary Employment, and Independent Living. Naturally, they removed 7 Obama Administration guidelines, which was real intent of Executive Order 13777
This is the same executive order that EPA Administrator Scott Pruitt has used to "gut" regulations that protect the clean air and clean water of this country: Like quality education, basic necessities for your family's survival.
I assume, based on the EPA mindset of eliminating these guidelines, it benefits the Local Education Agency (LEA) in an impartial hearing or a lawsuit resulting from a parent challenging their local school district about their student's quality of public education. I recommend networking in your community with parents of special education students, to find qualified advocates. You don't want to be an enemy of the school district, particularly if you're in an affluent community. "Affluent parents" of special needs children will typically place them in a private setting; therefore, your disruptive behavior might carry over to a school board meeting where the "affluent parent" is a board member and may not be sympathetic to your plight. Your natural tendency as a human being should be to protect the disabled. That natural tendency can quickly morph into a "sow Grizzly Bear protecting her cub(s)" when that disabled person is your kid. My journey with John has passed through 4 school districts (one twice) in 3 states, and I have hundreds of emails which reflect my "battle scars." Document everything, mainly from the IEP meetings, but be more professional than emotional. If school teachers and administrators only want to communicate in person or over the phone and there's no other option, memorialize the conversation in an email or letter, to all of the parties involved in the conversation, as soon as possible after the discussion.
As a former whistleblower against a large energy company whose Master Limited Partnership (MLP) is underwritten by the two huge Wall Street banks that I do business with, my reputation proceeds me. I am what's known as a Targeted Individual (TI) in a Gang-Stalking Operation that's been going on since 2002.
In my case, there's been a concerted effort to get me to abandon my son. It's been like driving down a highway with the car ahead of you dumping nails and screws in your path. The Bible refers to this as a "STUMBLING BLOCK". Eventually, they'll delay you from achieving your goal: Giving your disabled child the best life you can. Trust me; you don't want to be a TI with the "living hell" that follows you around. Let the parent advocate be the "bad guy." You both have God on your side.
Matthew 5:6,10 6Blessed are they who hunger and thirst for righteousness, for they will be satisfied. 10Blessed are they who are persecuted for the sake of righteousness, for theirs is the kingdom of heaven.
My parents died tragically on October 4, 2007, 2 days after my 47th birthday. Probate was completed on March 30, 2009. The price of oil had dropped into the $30 per barrel range the previous February, and I was laid off in a reduction of force from Chicago Bridge & Iron, a worldwide engineering, and construction company. We were performing the Front End Engineering and Design (FEED) for a large refinery in Cartagena, Colombia.
In December 2009, my life began again. God replaced the voids:
He replaced the love of my parents and the need for a woman in my life, with His love.
He replaced the loss of a career with the Faith that I would get through difficult times while serving Him for the next eight years.
In the Letter to the Hebrews 13:5-6, the unknown author writes; 5Let your life be free from love of money but be content with what you have, for he has said, “I will never forsake you or abandon you.” 6Thus we may say with confidence: “The Lord is my helper, [and] I will not be afraid. What can anyone do to me?”
My parents added Holographic Codicils to their wills in 2004, establishing a Family Trust and a Special Needs Trust for John. A Holographic Codicil is a document entirely in the handwriting of a testator that makes changes to some but not all aspects of the will and is executed by the testator without statutory formalities, i.e., without the presence and signatures of witnesses.
A Special Needs Trust (SNT) is a trust instrument for "special needs" or "supplemental needs" which refers to the requisites for maintaining the beneficiary's health, education, safety and welfare when those needs are not being provided for by any public or private agency, including any state, the United States, or any insurance carrier with insurance policies covering the Beneficiary. If you're the parent of a disabled child and inherit money from the estate of a loved one, I recommend finding an estate lawyer specializing in SNT's and discuss your options. My experience was that large trust companies and investment banks would not establish a trust for less than $500,000, so I set up the two trusts at a smaller Texas trust company at the advice of my estate attorney. I've been through 3 smaller trust companies, two based in Texas and 1 in New York. I believe when investing my money and my children's money to steer clear of equities, mutual funds and ETF's related to fossil fuel energy exploration and production. In Texas, that was problematic since the state is "ruled" by fossil fuel energy exploration and production companies. The first Texas-based trust company resigned in 2012 as corporate co-trustee. I then transferred the trusts to a New York-based trust company who resigned from both trusts as corporate co-trustee in October 2014, and I was finally successful in getting the two trusts transferred to another Texas-based co-trustee in December 2015. The matter had to be adjudicated in a Texas court, and because I had to sign hold-harmless and indemnity agreements with the New York-based trust company to get the trust monies, I won't discuss the matter any further. The moral of the story is find a like-minded estate attorney and trust company.
ABLE Accounts and Special Needs Trusts
Like I wrote above, I've had three corporate c0-trustees since establishing the two trusts. The last co-trustee took over the two trusts in December 2015 and held the trusts until September 2017. During that time, they found and hired two companies supposedly knowledgeable about Lifetime Care Planning and Medicaid benefits whose fees totalled about $2,100, payed for with disbursements for my son's Special Needs Trust. The first person was retained in February of 2016, and I had to threaten them with legal action. In his care planning report, he overstated John's IQ to 70-80, rather than 62-70, which could have disqualified John for disability benefits. He quoted one of John's care providers, saying John had Asperger's Syndrome rather than high-functioning ASD, which would have added to John's possible disqualification of benefits. He grossly overstated the amount in the family trust by a factor of 3.5. He reissued his report without any edits, then after my threat, he issued the report with the edits and abruptly left his company the following Friday. It took eight months from the time we signed the retainer agreement with this guy until we got the final report.
The second person was recommended by an attorney in Texas to the co-trustee as someone who could help expedite Medicaid benefits. She never developed any Medicaid guidance and when I asked her to investigate community residential opportunities in the area, she recommended that John be placed in a facility in Duchess County which specializes in low-functioning ASD individuals who need communicative devices, to express their needs to their care providers and where he could stay until the age of 21.
The 3rd person was recommended by the Transition Linkage Coordinator at John's current high school. I paid him a $500 consulting fee in July 2017 and met with him. He knew John had a Special Needs Trust and advised me that if distributions were being made for John's expenses, that he would be "penalized" by the SSA when calculating John's SSI benefits. When I contacted him this month, and we discussed the difficulties of obtaining SSI benefits, he finally brought up ABLE Accounts.
"The Stephen Beck, Jr., Achieving a Better Life Experience Act1 (ABLE) Act was signed into law on December 19, 2014, after many years of advocacy and bipartisan work in both the House and Senate. The law allows eligible individuals with disabilities the ability to establish “ABLE accounts'' for qualified beneficiaries that resemble the qualified tuition programs, often called “529 accounts'', that have been established under that section of the tax code since 1996. The new ABLE accounts will allow more individual choice and control over spending on qualified disability expenses and limited investment decisions while protecting eligibility for Medicaid, Supplemental Security Income, and other important federal benefits for people with disabilities. Without these accounts, many people with disabilities have very limited avenues to save and allow for further independence."
ABLE accounts and SNT's have the same goals: preserving needs-based benefits for disabled individuals; however, each is unique.
I've been tracking John's cost to our household since Jan. 2016, and it averages about $2,000 per month, of which $650 per month is for his share of our housing. John's grocery/dining expenses are approximately $350 per month. The remaining $1,000 is for his portion of household, clothing, medical, personal care, storage, TV/Phone/Internet and utility costs. I had to provide receipts, utility bills, bank statements and trust statements to the Social Security Administration (SSA) which they use to calculate his monthly benefits. The maximum benefit he can receive is $750 per month, but since funds from his SNT pay for his expenses, his SSI benefit will probably be reduced to "next to nothing." I submitted John's application in July 2017. When we met with them last November and brought the financial information we thought they needed, it wasn't enough. I provided additional info. in December and January and we're still awaiting a benefits determination. In our November meeting, when I asked the SSA representative how their formulas worked when factoring in SNT distributions, his response was "I'm not going to tell you how to 'game the system'." Evidently "gaming the system" is establishing an ABLE Account with funds from the SNT.
Regardless of monies available to set up a Special Needs Trust, start saving right now and do your best to maximize your annual contribution limits, up to $100,000 by the time they reach the age of benefits eligibility. The average return of the S&P 500 stock index for the 10 years ending Dec. 31, 2012 was 7.10 percent. The S&P 500 index mutual funds from Fidelity and Vanguard produced returns of 7.03 and 6.99 percent annually, respectively.
Using a 7% annual return and annual contributions of $14,000, it will take you six years to accumulate $100,000. A 7% yearly return and annual contributions of $7,000, will meet your $100,000 goal by the 11th year of contributions. Using the criteria I discussed above, "if you’re a U.S. resident in 2018, and you have a 3-year-old child who has just been diagnosed with ASD and an Intellectual Disability (ID)", a 7% annual return and annual contributions of $4,000, will meet your $100,000 goal by the time your child is eligible for government benefits at age 18.
FIND QUALIFIED INVESTMENT AND TRUST COMPANIES!!! I can't emphasize that enough.
In 2005, I was terminated by an engineering and construction company, working on a large refinery project for a facility in Minnesota owned by the Koch brothers and the cause for termination was "disengaging from the work." I'm still trying to figure that one out. Probably because I ignored a request by the owner (Koch) representative to provide a detailed analysis of why it was more cost effective to build roadways out of concrete, rather than steel. After 27 years in the fossil fuels energy business, starting as a laborer in 1978, working summers and holidays while studying to get my engineering degree, then working my way up to be a project manager, I was ready for a change. I decided to get my Series 7 and Series 66 licenses to be a registered investment advisor. At age 45 and recently divorced, it was too late in life to succeed with that career path. I moved back into fossil fuels in 2006 and stayed there for the next 3 1/2 years until I was laid off. The point I'm leading up to, even with that investment education and licensing, I would never put myself in a position to make investment decisions on equity or fund selections, other than giving the simple instructions of don't invest in anything related to fossil fuels energy.
Don't invest aggressively or believe this incredible stock market rise is sustainable. Donald Trump may tout the market performance is all his doing, but he'll quickly look to blame someone else when the market corrects itself and history says it eventually will. His tax reform will continue to help the markets, because large corporations are repatriating their overseas dollars to the U.S., but don't expect wages to rise. His "America First" philosophy will eventually become detrimental to market performance, particularly if he gets us into a war. Regardless of your politics or your ideology, as the parent of an ASD child know that DONALD TRUMP IS NOT YOUR FRIEND. He wants to diminish your health insurance and the Republicans will probably cut Medicaid to enhance spending elsewhere, like building a "war machine". Trump's only claim to fame within the ASD community is when he attempted to resurrect the idea that MMR vaccines cause autism based on a 1998 report by Dr. Andrew Wakefield which was thoroughly debunked by 2010. Trump's epiphany happened during his presidential campaign, I assume to get support from the ASD community.
Like I said above, find people you can trust to help you and your child
From the ABLE National Resource Center web-link above are the short versions and long versions of the ABLE Summaries from the ARC of the United States.
Below are web-links to the IRS regulations and guidelines for ABLE accounts.
Below is the latest state by state status of ABLE program implementation.
Malachi 2:16 For I hate divorce, says the LORD, the God of Israel.
2 Words: Stay Married.
There is a myth that the divorce rate of parents with an ASD child is 80%. From the link below, Researchers from Kennedy Krieger Institute and Johns Hopkins University found no evidence of that. The database was from almost 78,000 parents, 913 of whom had a child with autism, and included families from across the United States. The data profoundly showed that parents of autistic children divorced as often as parents of neuro-typical children. In this study, about two-thirds of the children lived with their two biological or adoptive parents and severity of a child's autism symptoms did not affect the likelihood on the success or failure of the marriage.
Dr. B.H. Freedman said; "While there are indeed stressors in parenting a child with autism, it doesn't necessarily result in the family breaking up more often than would occur in another family," and added, it's important for healthcare professionals to provide these families with support and training to handle the stresses they do face.
I can tell you from experience, somedays it can be overwhelming. Every weekday has the same issues of getting John ready for school; although, as he's matured, they've diminished in behavior severity over time, . As a single parent, the loss of income can be "crushing," unless you work from home.
One last piece of advice: Do your very best to never yell at your ASD child, regardless if they are 3 or 23 because rest assured; they will more than likely go into "meltdown" mode.
A 1926 real estate classified ad in the Chicago Tribune was the first to use the phrase "Location, Location, Location." My first wife used the same phrase when I bought a house in Katy, TX in 2003, which ended up being unscathed by Hurricane Harvey.
If you're a transient parent(s) with a special needs child who will soon become an adult, I suggest you locate to a state with Medicaid expansion and stay there if your employment prospects are stable and you want to be near your child, into adulthood.
From the above link: "One of the most significant changes under the Affordable Care Act is that – beginning on January 1, 2014 – states can choose whether to expand their Medicaid programs to low-income adults, many of which have never been eligible for coverage before. The Medicaid program is a state-administered health insurance program for low-income families and children, pregnant women, the elderly, and people with disabilities, among others. Although the Medicaid program is operated by the states, the federal government funds a portion of Medicaid costs and establishes guidelines for the program. States can decide how to design their Medicaid program so programs may differ in each state. For example, each state’s Medicaid program tends to have a different name. Before the Affordable Care Act, most states did not offer Medicaid coverage to adults, particularly those without children. The law allowed states to expand Medicaid coverage to most adults with incomes up to 138 percent of the federal poverty level. To assist states in expanding coverage, the costs of covering this population will be fully funded by the federal government in most states through 2016. Following a decision by the Supreme Court of the United States, states can choose whether to expand Medicaid eligibility to this new population or maintain their traditional eligibility criteria. Nearly all United States citizens under age 65 with incomes up to 138 percent of the Federal Poverty Level (FPL) will be eligible for Medicaid in states that choose to expand their program." In 2020 and beyond, the government will cover 90% of the cost of Medicaid Expansion.
This was the benefit of moving away from Texas and settling in the Tri-State area. In Texas, community residential opportunities and employment opportunities for adults with autism are very limited. Minimum wage is $7.25 per hour which is the current federal minimum wage that hasn't changed since July 2009. On a 40 hour per week, basis, that's $15,080 annually. Medicaid eligibility in Texas is available for the aged, blind, disabled and parents with dependent children with household incomes up to 18% of FPL. The 2017 FPL for 1 Person in Household was $12,060. 2.6 million people in 18 states are in the "coverage gap" of Medicaid expansion. More than a quarter of them are in Texas.
Texas is second largest state economy, after California ranked #1. It produces $1.59 trillion of economic output. From Forbes Best States for Business Texas boasts:
And to top it all off, the chairwoman of the former employer I blew the whistle on is a former co-worker of Gov. Greg Abbott, while they were both attorneys at the same law firm. New York City, our current domicile is known as the "Financial Capital of the World". It hosts 2 huge investment banks who underwrite the master limited partnership (MLP) of the former employer I blew the whistle on.
New York State
Below is the cover letter for a 2 inch thick 3-ring binder of diagnostic information that I provided to OPWDD on November 20, 2017. The next day, they responded with a letter requesting additional adaptive behavior testing using the Vineland-II or ABAS assessments. The question is, why did they need additional proof that John has ASD when the evidence was so overwhelming. It included six years of medical reports from Texas Children's Hospital, where John was diagnosed in 2002 and continued to receive treatment until 2008. Even Dr. Howard Reyer, OPWDD's Brooklyn Eligibility Coordinator, had written an email to me on July 26, 2017, stating; "What would also be gold is submission of the report from Texas Children's when the diagnosis was first made." Vineland-II private testing would cost $500 so during the week of December 4, 2017, I contacted the Transition Linkage Coordinator for my son's school, to determine if the school could perform the Vineland-II testing. She said that the school's psychologist could perform the Teacher Assessment but not the Parent Assessment. I didn't quite understand what she was referring to. She then began asking me about John's life skills at home: Can he dress himself? Can he cook for himself? Can he clean himself?, etc. I answered her questions accurately. The psychologist contacted me the same week and emailed me a consent form on December 8th to conduct the testing, which I returned to him on December 11th by email. The email included the letter from Dr. Reyer to me. I thought I made it clear to all of the parties addressed in the email to "ensure that the testing and assessments you provide satisfy their (OPWDD's) request,"i.e., that the Vineland-II Assessment would be administered in accordance with any instructions provided by the producer of the assessments. The school psychologist interviewed John and his teacher, on December 12th. There was no input from me, John's primary caregiver since August 2009. The Vineland-II Adaptive Behavior Scales assessment is conducted "in order to determine the level of an individual's adaptive behavior, [with] someone who is familiar with that individual, such as a parent or caregiver, [by describing] his activities. Those activities are then compared to those of other people the same age to determine which areas are average, above average, or in need of special help." I received the results on December 15, 2017.
The report was issued in 2 parts:
1. The Psychological Update Report including John's Vineland-II - Adaptive Behavior Scales - Teacher Rating Form
2. Addendum to the Psychological Update, which is a Childhood Autism Rating Scale II (CARS II) Assessment even though I didn't request additional testing beyond the Vineland-II Assessment. He again conducted the assessment without parental input. The school's psychologist concluded that "John's symptoms fell within the Minimal to No Symptoms Range of the Autism Spectrum Disorder.
Evidently, the school's psychologist felt compelled to verify John's diagnosis of ASD. I could have provided him the same information below that I offered OPWDD. In my opinion, it was his duty to request and review that information as a Best Practice, since John's diagnosis at Texas Children's Hospital was based on an Autism Diagnosis Observation Schedule (ADOS), which is one of the best assessment methods for determining Autism Spectrum Disorder. All of the testing reports were useless both as far as John's diagnosis and his adaptive behavior. It appeared that the consent form I signed was used to create an "avenue" of producing incomplete Vineland II assessments, as well as using an inappropriate Childhood Autism Rating Scale as the sole means of making his determination that John has Minimal to No Symptoms Range of the Autism Spectrum Disorder. The school's psychologist went to great lengths to diminish my son's disability while delaying his benefits. His actions were unprofessional, and I can only assume that his motives were despicable. He knowingly violated the Individuals with Disabilities Educational Act, (IDEA), Sec. 300.304 Evaluation procedures,
(b) Conduct of evaluation. In conducting the evaluation, the public agency must-
(1) Use a variety of assessment tools and strategies to gather relevant functional, developmental, and academic information about the child, including information provided by the parent, that may assist in determining-
(i) Whether the child is a child with a disability under §300.8; and
(c) Other evaluation procedures. Each public agency must ensure that-
(1) Assessments and other evaluation materials used to assess a child under this part-
(iii) Are used for the purposes for which the assessments or measures are valid and reliable;
(iv) Are administered by trained and knowledgeable personnel; and
(v) Are administered in accordance with any instructions provided by the producer of the assessments.
I had no choice other than to contact a private company, YAI, and pay $500 from John's SNT to have the testing performed on January 16th. I got the results last week which confirm John has ASD. The bottom line is, the New York City Dept. of Education cost us $500 and delayed his OPWDD eligibility review by 6 weeks.
California, hopefully our future domicile, now calls itself a "sanctuary state". The name is based on the war between evil and good...A war waged by the Trump administration against anyone who believes that caring for immigrants, who one day want to become U.S. citizens, is "good". My parents taught me at an early age that caring for immigrants is "good". I published a blog about it (below) in July 2013.
For both New York and California, the Medicaid Eligibility threshold is $16,643 (138% of FPL) BECAUSE THEY CHOSE MEDICAID EXPANSION
28 STATES WITH ABLE PROGRAMS THAT ARE NOW OPEN:
+STATE RESIDENTS ONLY
STATES WITH MEDICAID EXPANSION
STATES WITHOUT MEDICAID EXPANSION
District of Columbia*
Oregon* and +
22 STATES WITH ABLE BILL SIGNED:
STATES WITH MEDICAID EXPANSION
STATES WITHOUT MEDICAID EXPANSION
1 STATE NOT ADOPTING MEDICAID EXPANSION w/ NO ABLE BILL OPEN OR SIGNED
I was blessed with two divine gifts in 2009. 1) The ability to see the calamity that St. John saw while imprisoned in a cave on the Island of Patmos, Greece. 2) The love and mercy of God that get's me through each day as I climb further up a mountain to its pinnacle where sits a white flag waving in the wind and inscribed on the flag is the word "INDEPENDENCE." If you're a single parent with an ASD child, you continue that journey every day. "Base camp" was the medical facility where your child was diagnosed. You walked outside, probably with tears in your eyes, and saw the High Sierras in front of you, terrified of what lied ahead on an 18 - 19 year journey getting your child through school. Based on my life experiences, I can help people make that journey possible. I want to finish my journey helping people who are enduring or will endure the same Tribulations that I have. I want to establish a non-profit organization dedicated to assisting families of ASD children in Los Angeles County. There will be no fees charged to these families nor will contributions to the organization be accepted from anyone who could benefit financially from our work; i.e., recommending a particular service or business. The business will initially be web-based with national and local information to guide a parent(s) through the process of raising a child with ASD. It will be updated as information changes and as new information becomes available. There will be a blog posting where parents in the community can exchange information. Once established, we'll decide if we want to expand the web-based service to other large counties, or expand it by providing more personalized services, particularly life planning.
Just as I proposed in writing my book God's Fury, I'm looking for a partner. The partner who would be the benefactor, but also gain the satisfaction that comes from doing "God's Work." I'm looking for a partner with who's an activist, can empathize, and is not afraid of "getting their clothes dirty" for a righteous cause. I'm looking for a "fighter". I'm not looking for a partner who feels the need to be subject, submissive or subordinate to a man. Feminism is certainly a plus.
I'd like to establish a three year work contract, with the partner's right to renew. Between this venture (and supplementing my income driving rideshare, if need be), I need to make about $120,000 annually, not including federal and state taxes. Until I speak with an accountant in California, I won't know what the tax burden is on such a non-profit.
Some will read above and think the title should be changed to "Poor, Poor, Pitiful Me" but that's not the case at all. I want people to understand what it takes to raise a high-functioning autistic child into an adult, regardless of the STUMBLING BLOCKS. It's not all Tribulation if you put your heart and soul into it, rather gratifying to see your child gradually gaining independence. While I can't stop the ideology of some whose lives are dedicated to persecuting people while using rumor and innuendo (STUMBLING BLOCKS) a means of compensation, I can choose to live around like-minded people: A like-minded governor, 2 like-minded senators, and 1 like-minded congressman from California's 33rd congressional district.
Scriptural usage of "STUMBLING BLOCKS":
Leviticus 19:13-16 13You shall not exploit your neighbor. You shall not commit robbery. You shall not withhold overnight the wages of your laborer. 14You shall not insult the deaf, or put a STUMBLING BLOCK in front of the blind, but you shall fear your God. I am the LORD. 15You shall not act dishonestly in rendering judgment. Show neither partiality to the weak nor deference to the mighty, but judge your neighbor justly. 16You shall not go about spreading slander among your people; nor shall you stand by idly when your neighbor’s life is at stake. I am the LORD.
Ben Sira 31:5-7 5The lover of gold will not be free from sin; whoever pursues money will be led astray by it. 6Many have come to ruin for the sake of gold, yet destruction lay before their very eyes; 7It is a STUMBLING BLOCK for fools; any simpleton will be ensnared by it.
Romans 14:13 Then let us no longer judge one another, but rather resolve never to put a STUMBLING BLOCK or hindrance in the way of a brother.
Revelation 2:12-14 To Pergamum. 12“To the angel of the church in Pergamum, write this: “‘The one with the sharp two-edged sword says this: 13“I know that you live where Satan’s throne is, and yet you hold fast to my name and have not denied your faith in me, not even in the days of Antipas, my faithful witness, who was martyred among you, where Satan lives. 14 Yet I have a few things against you. You have some people there who hold to the teaching of Balaam, who instructed Balak to put a STUMBLING BLOCK before the Israelites: to eat food sacrificed to idols and to play THE HARLOT.
Just as 2 parents fled from Bethlehem to Egypt for the safety of their son, I must too relocate from the "Financial Capital of the World" to a "Sanctuary State" for the safety of mine.
Author G.R. Miller, utilizing his engineering and project management experiences in the fossil fuels energy sectors and guidance from God, takes a pragmatic approach of part preterism, part symbolism and part literalism in decoding the Revelation of Jesus Christ. He exhibits a Climate Change connection through scripture, commentary and illustrations.