6 Reality Checks: The Bootless Have No Bootstraps

barefeet2

“…it is a cruel jest to say to a bootless man that he ought to lift himself by his own bootstraps.” –ML King Jr

I don’t know why I’m surprised with comments that prove many people don’t know how to walk in someone else’s shoes. After sharing about the problem of paying for long term care for adults with severe autism on Twitter–

“Paying for LTC 4 adult children w/autism requires a Medicaid waiver. Many states have enormously long wait lists”

someone (in a series of tweets) tweeted this.

“That’s ridiculous. Parents were good enough before18 but not after???? And aren’t parents responsible even after…” [second tweet] “Wouldn’t it be our job to make sure they were taken care of??? Same as if they were minors?” [third tweet] “Parents adjust financially as they need to. We always have.” [fourth tweet] “& we haven’t had to deal with the what if…..only the which one.”

Reality Check #1

So let’s do a reality check here. First, many people with severe autism cannot communicate at all. Second, some people with severe autism wear diapers and must be changed as adults. Third, most people with severe autism cannot work. Fourth,

“Parents don’t live forever & that is the sad fact. The situation 4 some families is dire.” [second tweet] “What do parents do if they are poor? What do they do if no one will take them (the adult children)?”

Reality Check #2

I also directed the person to a post I wrote after doing research for a client on what is available for people with severe autism. The reality is this. It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person. If that isn’t scary, just read on.

Reality Check #3

reality-check200x192Locating residential homes that are specifically for autism is challenging. One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, or NARPAA. It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.” There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Enter Dr. Ruth Sullivan

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan. She is a world renowned authority on autism, having founded the National Autism Society as well as founding and directing the Autism Services Center. She also wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA). This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities. This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this. Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers ends upon graduation from high school. Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Reality Check #4

Even though IDEA mandates services during school, many parents have to fight for those services. Exhausted from this effort, they often are not prepared for the transition from high school. It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism. Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Reality Check #5

There is a significant shortage of residential services for autism in the United States. In fact, even staff at some residential centers for autism do not have to have the kind of specialized training required by public schools for special education teachers working with children with autism.

Many of those who need residential care end up in group homes and centers that are not specific to autism. Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis), most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism. Unfortunately, these behaviors are likely to be dealt with in a punitive manner, which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered. For example, lifelong provision of services is a key difference among facilities. When first reviewing organizations, it was troubling to discover that some facilities require clients to work. If they are too old or unable to work, they are not allowed to stay on in the community.

Reality Check #6

Talking to several of the directors of these residential programs was eye opening. The only real source of funds for autism is Medicaid and that is only through a limited program called the Home and Community-Based (HCB) Residential Waiver. Having Medicaid doesn’t automatically mean you have the Waiver. The Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement.

Thirty-five states require insurance companies to provide some coverage of critical autism therapies for both children and adults. Twenty-three of these states require coverage of autism treatment costs the other twelve require limited support.

Conclusions

“Before you act, listen.
Before you react, think…
Before you criticize, wait…
Before you quit, try.” –William Arthur Ward

It’s time to stop knee-jerk reactions to Government spending on those who are poor or defenseless.

Very few parents in the US can afford between $75,000 to $200,000 per year to care for autistic children and adults.

First posted on LinkedIn

Children and adults with severe autism are people. Their parents do not live forever. Leaving them to live or die on the streets is cruelty beyond measure.

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Why Parents MUST NOT Stop!

mental health special needs

Parents of Children with Special Needs

I am constantly amazed at the bravery of some parents who are activists for their children in schools in the US. There are so many exhausted parents looking desperately for help in a place that is mandated by US law to help, public schools.

“I Am Adam Lanza’s Mother” Blogger Reveals Regrets, Hopes For Mental Health Care

On May 30, 2014, WBUR -Boston interviewed a mother who wrote a post a year ago called “I Am Adam Lanza’s Mother” last year.  Her post went viral and she and her family were in the glare of the media’s spotlights.  Here is her interview:

http://cache.wbur.org/audio/player/news/2014/05/30/i-am-adam-lanzas-mother-blogger-mental-health

mental health special needsLook at the Comments

I read the interview and then I looked at the comments. WOW! The comments are powerful! Here are a few and I will add them as this post evolves.

Ellen Chambers • 2 hours ago
There is another culprit in our society’s long-standing failure to address the needs of individuals with mental health disabilities (and other disabilities that can sprout mental health implications when not properly supported): our public schools.

Like it or not, schoolchildren with special needs have a legal right to educational services that will prepare them for further education beyond high school, employment, and independent living. Like it or not, these services must be delivered in a manner that allows them to make progress at a rate commensurate with their innate cognitive ability. Like it or not that means school districts must address a student’s mental health issues that impact on that mandate. That’s the law. If you don’t like it, it’s a free country, you can lobby Congress to change it. Until then, that’s the law.

The reality, though, is very different, and therein lies the problem (actually, therein lies the ticking time bomb.) Public school districts in Massachusetts (and nationally) violate students’ special education rights at an alarming rate. According to the Massachusetts Department of Elementary and Secondary Education (MDESE) between July 1, 2011 and June 30, 2012 there were 715 such violations recorded in the Commonwealth. Those are the violations that were discovered… the actual number is hundreds of times higher.

We’re not talking about pesky little paperwork violations. These are substantive violations that have an immediate and negative effect on the lives of students with special needs and their families. Some of these students present with primary mental health disabilities, others develop secondary psychiatric issues due to years of preventable academic struggle and failure and the the emotional battering that goes along with that. Tens of thousand of Massachusetts students with disabilities are failing at rates far out of proportion to their innate abilities. Anyone wanting the numbers to prove this can contact me privately at emchambers@charter.net

I am working a Massachusetts case right now involving a 15 year old boy with primary diagnoses of autism and obsessive compulsive disorder. This young man has great potential, he is not cognitively impaired. However, his autism makes it very difficult for him to control his behavior. Over the past year his behaviors have escalated alarmingly, despite the best efforts of his family to work with their local school district to address them. He has had two psychiatric hospitalizations in this year alone because he presents “a risk of harm to others” according to the hospital. His psychiatrist, who has treated him for over two years, states he “has had a significant increase in sexualized and assaultive behaviors, self-injurious behaviors, and verbal threats towards others.” His pediatrician who has treated him for 13 years has written to the school stating his “autistic symptoms present significant and imminent danger of serious bodily harm to both himself and those around him.” The school district has received similar letters from many others involved in his care, and all have recommended he be placed immediately in a residential school equipped to work with him.

This wonderful young man, through no fault of his own, is a ticking time bomb. Why? Because his school district has turned a deaf ear to the warnings of multiple clinicians, and has ignored it’s legal obligation to properly educate him. Meanwhile he, his family, and his community are, today, in “significant and imminent danger of serious harm.” The school committee, school superintendent, school special education director, and the local police have all been notified. Despite all of this, his family’s only recourse is to hire a lawyer at many thousands of dollars (which they don’t have) to take their school district to a hearing to force them to comply with the law.

I spoke with the school district last week and pointed out that this case is not at all unlike those of John Odgren, Adam Lanza, Phillip Chism, and Elliott Rodger. Still, they refused to place him in a residential school. They gave no cogent reason for their position.

A tragedy could very well be in the making here, everyone knows about it, and NO ONE is doing anything to prevent it. And, God forbid, if something tragic does happen, I can assure you the school district will not be held to account. We have a broken, dangerous, mental health system. That’s well known. We also have a broken, dangerous, public education system that has flown under the radar for decades, inflicting damage every day.

Ellen M. Chambers, MBA
Special Education Activist
Massachusetts
(978) 433-5983
emchambers@charter.net

MarionKing • an hour ago
Ellen, Thank you for such a clear and compelling discussion of this issue. I have experienced the failure of my public school to address the needs of my children, one of whom has mental health needs secondary to his autism diagnosis, and the other of whom has a primary diagnosis of mental illness and a rare, complicated physical disorder.

I also heard Liza Long speak yesterday in Marlboro about stigma, and speaking out, and about how her state’s Child and Family protection services provided her with a horrific ultimatum.

My advocacy on behalf of my children and as a the Vice President of the Board of Directors of SPEDWatch have been used against me by my school district and the legal system, as if advocating for all children, my own included, was somehow indicative of some parenting flaw.

The world has gone mad.

The sooner that parents, educators, first responders, elected officials, social workers, medical and mental health providers, aunt and uncles, grandparents and siblings, friends and neighbors, in short, all of us, shout from the rooftops that schools and mental health systems must collaborate and actually MEET the needs of our children, the sooner we will have an end to the stories of Adam Lanza, Elliot Rodgers, Ellen’s young autistic client, my children, and many more.

Marion King, Foxboro MA
http://www.spedwatch.org

Paying for care: What happens to 21 year old family members with severe autism after graduating from high school? Part 2

It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person.  If that isn’t scary, just read on.

Locating residential homes that are specifically for autism is challenging.  One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, hence NARPAA.  It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.”  There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan.  She is a world renowned authority on autism, founded the National Autism Society and founded as well as acted as director of the Autism Services Center.   She wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).  One of her concerns is echoed by Phil Blevin, Director of  Carolina Autism, is the lack of training of the people who are caring for individuals with autism.

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA).  This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this.   Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers end upon the child graduates from high school.  Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Often families are not prepared for this transition.  It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism.   Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Many of those who need residential care end up in group homes and centers that are not specific to autism.  And most group homes and other residential centers are not experienced with autism.  Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis).most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism.  Unfortunately, these behaviors are likely to be dealt with in a punitive manner which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered.  For example, lifelong provision of services is also a key difference among facilities.  When first reviewing organizations, it was shocking to discover that some facilities require clients to work.  If they are too old or unable to work, they are not allowed to stay on in the community.

More on this issue in a later post…

Parents Take Notice: Seclusion Rooms

This is beyond disturbing. Does anyone from the school(s) explain the length of time rationale? I mean, don’t get me wrong…the padded room is ridiculous enough, but more alarming is the length of time a child is placed in this type of room as a  ‘time out’ for their behavior.

Most childhood experts agree that the 2-5 minute rule is sufficient enough time to calm down any unruly behavior. After that, a ‘time out’ isn’t even effective.

It was a horrifying experience and what started my investigating into it was the length of time. We now have in place time limits as to what they can do and for how long and when a call is to be made to us. I would rather come get my son than have him be subjected to such treatment.

This absolutely sickens and frightens me! My child’s summer program was in a school building in [name removed to protect child] that had one of these padded rooms. We only found out about it after a note came home the first week stating s/he had been placed in time out for over an hour because s/he wouldn’t comply. I was livid and shocked that my 6 year old, whom I had never been told prior of such issues, was in any time out for that length of time. When I went to the classroom to see where this time out took place (it was in a makeshift seclusion area with three walls and a mat higher than his/her head, for the fourth) was when I saw this padded room. I was told that s/he wasn’t placed in there because another child was already using it. They told me that s/he was in for so long because s/he kept crying and trying to kick the mat down. Well, hello, s/he’s 6 years old and mostly non-verbal! Wouldn’t it make sense that s/he would be scared and react that way? Needless to say, we kept major tabs on them for the rest of the summer. It’s very sad that this is how some are treating our children, special needs or not. I’m not sure what we can do but keep tight eyes on them and make it known that we will not tolerate this treatment. It’s just another scary part of letting our children, especially those without their own voices ,out without us. I hope something is put into place to stop allowing this.

These stories are not uncommon and they are covered in the press because they are so compelling. Never covered are the stories about the trauma kids suffer everyday from being forced to endure years of failure, humiliation, and rejection because their schools refuse to provide them with the services they need in order to learn. 

The above comments in Italics are only some of the comments made by real parents in Massachusetts and over the United States over a truly disturbing development in “care” of our children.   It is “seclusion rooms.”  Please read this description on the opinion page of the New York Times.   This is occurring all over the US.  Here is another story about seclusion rooms.  Then sign this petition.  We parents need to act.

The photo above is from CAIC .

Light A Lamp

http://katscafe.org/wp-content/uploads/2012/03/Bobby-1-Kind.jpg

When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.

Now I wonder about their life, their future, their heartaches to come.  That change occurred in me when a friend’s son was born.  As the child grew and changed.   As autism and seizures took him away.

When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.”  I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand.   How they lost their little boy without a funeral.

I thought about how unaware everyone was when this happened.

Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities.   How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family.  How these parents are expected by our society to be super-human.  How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point).  How they are forced to advocate for their child with healthcare providers, educators, legislators.  How they are supposed to have the money and wherewithal to pay for whatever special services they need.  How so few people understand that these parents are all alone.

I held a tweetchat on Thursday April 12 and advertised it on LinkedIn.  I received this response from the father of a child with autism

Dear Dr. Kathleen Hoffman!

You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!

Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?

The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.

Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….

The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.

I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.

Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.

I am humbled by this father’s comment.

We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world.  Please do your part to spread the word and advocate for these devoted, loving people.  They need our help.

A National Emergency: Horrible Death for Older Man With Autism

Update: There has been a horrible event in California: This is a matter of LIFE AND DEATH. Isn’t everyone supposed to be cared for? Basic Police Work Ignored

The US Centers for Disease Control says that the prevalence of children with Autism Spectrum Disorder is one in every 110 children.  The CDC’s 2007 report describes children born between 1992 and 1994.  Those children are now aged 17 to 19, in other words they are about to “age out” of the school setting.  Extrapolation of the numbers means that approximately 1,495,264 will soon be adults with autism in the United States.  There are thousands more uncounted adults with autism.

As many as 40% of those with autism are completely nonverbal. In 1975 Congress passed the Education for All Handicapped Act.  Now called the Individuals with Disabilities Education Act (IDEA) it expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Families of children with autism have come to rely heavily on the services that are provided by public schools.  Unfortunately the daily hands-on special education services provided free by university trained public school teachers end upon the student’s graduation.

Absolutely no services are mandated by the Federal Government for those children with autism (now considered adults at age 21) after they leave public school.

The families of adults with autism are faced with finding help where there is little help to be found.

Until the early 1990s, autism was said to be a rare disorder, approximately four per every ten thousand births.   Scientists believe that it is caused by a combination of environment and genetics.

Whatever the cause, there is awareness of autism among the general population but not realism about autism.The reality is that there are children and adults with autism that are severely disabled.  Some of these individuals require round-the-clock, 24/7, eyes-on vigilance.  Unfortunately, some families cannot cope with this kind of care at home. Sometimes these children have no family.

Prior to the 1980s, the only choice for families with children with severe autism was placing their loved one in a state institution.  There were almost no community services available except a few private schools or day programs for individuals with mental retardation. The staff at these private programs and at state institutions were not trained or experienced in working with people with an autism diagnosis. Often those presenting with a diagnosis of autism were refused admission.

Although there is much that was good in the de-institutionalization movement of the 1980s, there was an unfortunate side-effect.  Communities were supposed to fill the gap left by the institutions.  That hasn’t happened.  It costs over $75,000 per year for round the clock care for one adult with autism and expenses can go as high as $200,000 per year per person.  Who can afford this?  No insurance company covers the annual expenses of long-term care.   Most families have to rely on Medicaid to cover this expense.  Unfortunately in most states, the Medicaid that covers physician visits and medication is not the same Medicaid that pays for residential care.

The Medicaid program that pays for residential placement is a limited program called the Home and Community-Based (HCB) Residential Waiver.   Having Medicaid doesn’t automatically mean you have the waiver.  Unlike the mandatory services under I.D.E.A, the Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement. What is available for people with autism who need residential services?  Not a lot…More in a future post.