6 Reality Checks: The Bootless Have No Bootstraps


“…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.


“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.


Schools on Wheels: Helping Homeless Children in Massachusetts

A few years ago I spoke with a group of mothers who were concerned about their children’s school.  The neighborhood they lived in is called “transitional” and the school had an 85% turnover rate.  That means that 85% of the children who started school in the beginning of the year didn’t finish the school year in that school.  One hundred percent of the children received free breakfast and free lunch and it was the policy of the school to leave any left over cereal boxes out for the children to take home to share with their family for dinner.  

Moving to Massachusetts, I’m always struck by the wealth that I see around me.  The libraries are filled with books, the public school my son went to last year kept begging families to request free lunches so that they would qualify for Title 1 status.  YET, poverty is real and  homelessness exists in Massachusetts.

Recently WBUR, one of  two public radio stations in Boston (the other is WGBH, another sign of the wealth of this area of the country) had a story that I want to share.  It is about homelessness and school.

The statistics are staggering.


schools on wheels banner The story was about a teacher, Cheryl Opper, who read about the work of Agnes Stevens.  Agnes started Schools on Wheels in 1993 in Santa Monica, California.  It is a volunteer tutoring program to provide academic stability for homeless children.

In 2004 Cheryl started Schools on Wheels of Massachusetts in her kitchen where she trained volunteer tutors that she recruited from local universities.   She worked with 20 children from two family shelters.  From these humble beginnings,the program has served over 1700 children and has logged in over 24,000 tutoring hours.

Here is the radio interview about this program.  Please listen and learn more.

Every Human Has Rights!

Over the past 8 years, Nicholas Marshall Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.  This post is a continuation of the conversation we started with Cooper in October,”Great Things Are Possible.”

As a consultant to UNICEF’s Middle East and North Africa Regional Office and as a child protection officer in Haiti, Cooper has seen, first hand, the importance of the central tenets of the human rights approach:  empowerment and accountability.

Presently Cooper is a humanitarian researcher at the FXB Center for Health and Human at Harvard University. He started our conversation with a basic definition of human rights, “Human rights are freedoms and entitlements afforded to people purely on the basis of being human,” he says.

According to Cooper, all countries have signed at least one human rights treaty.  After signing a treaty, the country has to pass a law that ratifies the treaty.  This is how human rights agreements become national obligations.

“Human rights have both rights-holders (every person) and duty-bearers (countries, as they are the ones that sign HR treaties)  Human rights approaches seek respect, protection, and promotion of human rights by empowering rights-holders and duty-bearers to claim and advocate for their rights (rights-holders) and respect, protect, and promote fulfill (duty-bearers).,”Cooper states.

Viewing heath from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  “Human rights approaches change the focus from “do this” to “you have a right to this, here’s how to claim it, and we’ll help you do it,” Cooper explains.   Participation is the difference.  It’s not a top-down approach but it involves letting countries (the duty bearers) know what they should be doing. Because of this, “Human rights approaches would, therefore, change both the message itself and to whom the message is directed : …and the desired outcome.” With regard to health communication, these are important changes to the message and the audience.

With regard to policy, the human rights approach concentrates on those who are the most vulnerable. Policies created using this approach would focus on “promoting awareness, meeting needs and enforcing compliance,” says Cooper.

Confusion seems to occur when discussing rights and health.  “There is no right to healthcare, but there is a right to health,” Cooper says.  The United States has ratified a declaration of human rights, (Article 25 Universal Declaration of Human Rights and Article 12 of the International Covenant on Economic, Social and Cultural Rights), which means that the US has made a commitment to create legislation which fulfills this right.  For example, access to affordable care of a high quality is part of the right to health.  “The government DOES have a duty to respect, protect, and PROMOTE health,” explains Cooper.

Under the rights framework we have both freedoms and responsibilities.  Suppose you are a smoker.  “While you are free to smoke, you are not free to give somebody cancer.  Giving someone cancer would mean that you were violating their right to health (maybe life).”  What if your child got lung cancer from second-hand smoke? “Under the rights framework, your child would be able to seek restitution from you for giving them cancer.”

Human rights provides a framework for advocacy.  In this case, smoking bans PROTECT the right to health of the child, while PROMOTING health generally.  Cooper adds, “hough human rights themselves are conceptually apolitical, their articulation isn’t. Nor are the policies and programs to meet them.”

Programs built from a human rights perspective might simply inform people of their rights. Others might provide legal service.  “A program must never violate rights itself. This is non-negotiable, as rights cannot be “traded off” against each other The guiding principle for non-governmental. organizations is capacity building, of both the rights-holder and duty-bearer,” Cooper affirms.

The ultimate goal of human rights is that everyone “has the ability …to live with their rights fulfilled and protected… As RIGHTS, they are not things that can be disputed. You have them because you are human.”

“Great Things Are Possible”

Ask a scholar of human rights a seemingly innocuous question and suddenly you are transported into another world.  As Nicholas Cooper observes,  “People in United States are more familiar with civil rights language, than human rights language.”  That’s what you’ll find while exchanging ideas with Cooper.  For example, when asked to define a “rights-based approach to health,” Cooper has a ready answer:

Human rights-based approaches broaden “development” to include agency, empowerment, and duties. Human rights approaches identify duty holders (principally states) and duty bearers (all people).  They seek change by empowering rights holders to seek, advocate, and get their freedoms and entitlements…and empower duty bearers to respect, promote, and fulfill those rights. “

Okay, lost me.  Start out with the basics.  So Cooper backtracks.  “If I have a right to health, others have an obligation to respect, protect, and fulfill that right…If I have a right to freedom of religion, others have a duty (or obligation) not to violate that right.”

That makes sense.  Viewing health from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  Over the past 8 years, Nicholas M. Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.

This language barrier and the lack of knowledge of human rights law leads to many missed opportunities.  “We need people who can speak both languages, and who have a willingness to act,” Cooper explains.
Human rights are derived from international and national law, legislation and treaties.  “Health is definitely a human right established by the United Nations Covenant on Economic, Social, and Political Rights Article 12, among others,” Cooper explains.  From this perspective, Cooper has acted as a Consultant for UNICEF in the Middle East, an International Program Development Participant in India and most recently as Child Protection Officer after the earthquake that devastated Haiti in 2010.

According to the World Health Organization, the right to health does not mean that everyone must be healthy, but it does compel governments to create conditions so that everyone can be as healthy as possible.  Cooper clarifies, “The right to health … includes the determinants of health.  Food, water, housing, etc.  As the preamble to the WHO Constitution says, ‘health is not merely the absence of disease.’”

So, if health is a human right, how do we assure that it is respected?  By “empowering people to claim the right, empowering others to respect, protect, and fulfill those rights,” Cooper explains.  “The human rights approach is about capacity building.” In other words, the human rights approach is about teaching everyone, those in and outside of government about their basic rights.  “So, a human rights approach would, say, give people the information, tools, and processes to recognize and act on human rights, “says Cooper.

At Harvard’s Francois-Xavier Bagnoud Center for Health and Human Rights, his work has focused on the protection of children and youth using human rights and sustainable livelihoods approach.  This approach focuses not only on addressing risk and vulnerability, but also on providing developmental supports and opportunities that are protective and promote success and resilience.

 In the United States there has been a long discussion about affordable care.  But from a human rights perspective it is clear. “Affordable care is essential to have a fair society.  The US does have an obligation, especially given its capacity to do it. But, US judges also don’t know how to handle human rights law,” Cooper observes.    At the FXB Center there are courses available to teach judges and  lawyers about human rights law.

According to Cooper, the human rights approach is about giving people the information, tools, and processes to recognize and act on human rights.  “Talk about Human Rights  in education campaigns, talk about them to a hospital administrator, make budgets based on Human Rights.”

“Too often, public health science ends with a journal article, not action.  There needs to be follow up and implementation.  There is so much we know, but so little is implemented,” Cooper insists.  That’s why Cooper acts by conducting water and sanitation education, instructing on malaria and HIV/AIDS transmission, and exploring how new technologies can be used to identify need and deliver assistance in humanitarian and development settings.  And he wants others to act.   “Great things are possible; how do we get there with what we have? Human rights exist (in law). Global health issues exist. You are affected. See and act.”

A diagram on health and human rights can be found at http://www.who.int/hhr/HHR%20linkages.pdf

Based on twitter chat held on October 1, 2012.  Full transcript can be found at #hchlitss The Health Communication, Health Literacy and Social Sciences Tweetchat

More information on Nicholas Cooper can be found on LinkedIn.

For more information on the Francois-Xavier Bagnoud Center for Health and Human Rights click this link.