He “Could Be Another Lincoln”

People with a developmental disability (DD) need a champion, an iconic figure that encompasses public perception, one that transcends time and political isles: consider the Scarecrow from The Wizard of Oz.

scarecrow in fieldThroughout history people with developmental disabilities have aligned with the Scarecrow. They’ve been perceived as inferior, sub-human, and subject to inhumane treatment, including tied to a stake—although not for utilitarian crop-protection purposes, but to be burned.  A chronology from Teaching for Diversity and Social Justice by Adams, Bell, and Griffin records that through to the 1700s people with DD in many countries were considered evil, possessed. Public policy at the time was torture, burn, or leave to die.

Toward the Age of Enlightenment attitudes and policies shifted slightly. People with DD in the United States had a champion and were upgraded from evil to defective. They had an advocate in Dr. Samuel Gridley Howe, who appropriated money from the Massachusetts legislature in 1848 to teach “idiotic children.” He later founded the Massachusetts School for Idiotic and Feeble-Minded Youth in 1850, believing in their ability to learn.

While Howe did pioneer educational change, he was no Scarecrow—he was not on the receiving side of the fence. He could go only so far in the face of flying monkeys.  These monkeys, including the Nazi regime, practiced methods deemed appropriate for people classified as “defective.” Yet Germany was not the only country who targeted them for sterilization and euthanasia. They may have been the biggest monkeys, but they were followers not leaders in this movement.

The Nazis were guided by the Wicked Witch of the West: The National Eugenics Office in New York.

The National Eugenics Office, a center of human traits and genetic study, presented their study in February, 1914:  “Committee to Study and to Report on the Best Practical Means of Cutting Off the Defective Germ-Plasm in the American Population.” They investigated “all phases of the problem of cutting off the supply of defectives.” They listed “Classifications of the Socially Unfit.” People with DD, identified as The Feeble-minded Class, were first on the list and determined by the committee to be idiots and imbeciles and the “greatest of all eugenical problems.”

Hitler was inspired.

Nazi rule passed German Law for the Prevention of Genetically Diseased Offspring in 1933, implementing sterilization. In the Adams et al. chronology, by 1939—when MGM produced The Wizard of Oz—Hitler was lockstep with 45% of the U.S. who believed in euthanasia for “defective” infants and began Germany’s Euthanasia Program on people with DD, the guinea pigs for selective race:

70,000 adults and 5,000 children put to death during the official phase and over 200,000 killed in total. Children were killed with morphine injections, gassed with cyanide or chemical warfare agents. They were also slowly administered poisons, starved to death, and exposed to cold so that the deaths would appear “natural.”

The United States Holocaust Memorial Museum further describes the transition from elimination of the “unfit” toward racial genocide: “The most extreme measure, the Euthanasia Program, was in itself a rehearsal for Nazi Germany’s broader genocidal policies.”

Edwin Black in his book, “War Against the Weak: Eugenics and America’s Campaign to Create a Master Race,” writes the “lethal chamber” was the “most commonly suggested method of eugenicide.” He also notes doctors and institutions opted out of “organized lethal solutions,” operating in favor of covert techniques such as giving institutionalized patients milk from tubercular cows and other death-by-natural-looking-cause methods.

Neurologist Foster Kennedy encouraged elimination of the “hopelessly unfit.” Under the spell of the Wicked Witch of the West, Kennedy published an article in the American Journal of Psychiatry in 1942, promoting euthanasia of the “feebleminded” as a mercy killings: “Here we may most kindly kill, and have no fear of error.”

Slowly, advocates for people with blindness, mental illness, and physical disabilities—like Jacobus tenBroek founder of the National Federation of the Blind and Professor Timothy Nugent of the University of Illinois—rose up. They fostered programs and legislation that brought disabilities out of obscurity. Developmental disabilities, however, stayed in the shadow of other disabilities for years, a sub category. Some states in the 50s preferred they stay out of sight: “prohibiting persons ‘diseased, maimed, mutilated, or in any [way] deformed so as to be an unsightly or disgusting object’ from appearing in public.”

Then from 1954 to 1960, legislation journeyed down the civil rights road, beginning with Brown v. Board of Education and Social Security Amendments. A storm was brewing.

The White House fell in on the witch in 1961 and out stepped John F. Kennedy. JFK implemented the President’s Panel on Mental Retardation—a beginning that fundamentally challenged the institutional status quo. The world up to this point had never seen an advocate for people with developmental disabilities like JFK. He was intimately familiar with the challenges and the abilities of people with DD. For him there was “no place like home,” and home, community, is where he believed all people belonged.

Since JFK’s time there have been individuals and parent lead grassroots efforts and groups such as The Arc who have been instrumental in systemic change—hard fought battles against public perception and public policy. There have been heroes of specific diagnosis like Temple Grandin for Autism. Still, as sympathetic as JFK was, there has never been a universally accepted champion, an empathetic one that embodied the misjudged, mistreated, mistaken essence of people with developmental disabilities like the Scarecrow.

Certainly times have changed for the better. Labels have transcended with perception and treatment from evil to idiotic to defective to retards to entitled. People with DD and their caregivers are now much less victims of institutions than they are of bureaucracy, budget cuts, and political warfare: Individual with Disabilities Education Act (IDEA) noncompliance battles; health and economic losses on unsupported family caregivers; 300,000 eligible people with DD on waitlists for Medicaid services with vague wait times of five to twenty years.

People with DD are eclipsed in the Medicaid conversations, a subgroup yet again. According advocacy nonprofit organizations like The Arc, people with developmental disabilities are “still in the shadows.” Sprout films about and by people with DD dedicate their mission to “making the invisible visible.” Meanwhile, mega-profit corporation COKE prints “you retard” on their product caps and selectively excludes this minority in their “diversity” commercial.

People with developmental disabilities need a high-profile champion. They need a recognized celebrity like Michael J. Fox for Parkinson’s and Elizabeth Taylor for AIDS. They need a nonpartisan pilot of their balloon: the Scarecrow. They also need Professor Marvel to reach in his little black bag and give congress a brain, courage, and a heart so that the elected power-that-be eliminate the Medicaid Home and Community Base Services (HCBS) waiting lists.

People with developmental disabilities need a voice that will be heard, seen, and respected.  After all they have been through, they deserve it.

Advocacy Series: Exploring Your Inner Advocate

You don’t need a PhD of Advocacy & Care to be an advocate. Just look inward.

You might even be using skills in your day to day life and not even recognized them as transferable talents. By identifying our strengths—and our challenges—we can recognize what we do best and where we need support.  For example, personal strengths could be a diplomatic demeanor, natural leadership abilities, or a positive attitude.  Personal challenges might be organizational skills, public speaking, or a compromised back.

Take inventory of your comfort zone, of all your abilities. Write down answers to the following questions (this is just for you – there is no judge and there will be no grade):

  1. Who am I?
  2. What am I good at?
  3. What are my job skills?
  4. What do I like to do?
  5. What do I want to learn?
  6. What do I avoid?
  7. Why?
  8. What do I want help with?
  9. Who can help me?
  10. Where do I find joy?

Page one of becoming an advocate is choosing the kind of advocate you want to be. You decide where you will be the most effective based on your innate and learned capacities. You dictate the action. You write the story. The next step is learning to tell it.

Until then, you take care.

the story of advocacy

the story of advocacy

 

 

Advocacy Series: Advocacy 101

What is advocacy? Let’s spell it out: advocacy is not a four-letter word (although we may have been frustrated enough to use one). Advocacy and advocates are not something people need to fear.  It is simply being for Something.

Advocacy does not mean you have to burn your bra…or your jock strap.  You don’t have to heft poster board with a magic-marker-message above your head and chant, “Down with (insert antagonist of choice here)” among a sea of protesters, nor do you need to lie down in front of a bulldozer. True, this is advocacy.  But this assertive form of activism is one that has often reached the desperation stage—and admittedly, there have been moments of desperation in my own caregiving days and nights where I considered extreme attention-getting methods.

So what are the different forms of advocacy?

  • Legislative – lobbying to legislators to influence public policy.
  • Legal – authorized to represent someone in a legal process.
  • Mass – large group efforts, such as petitions and demonstrations.
  • Social – create awareness or change on behalf of something or someone.
  • Self – speaking up for yourself, your particular demographic.

Think of advocacy like a story. Where starts and where it goes is up to you. You choose the characters and decide the setting. Don’t worry about the key element that drives the narrative—conflict. That’s a given or you probably wouldn’t be advocating for/about a Something. If you don’t know where to start, channel your inner Glinda: “It’s always best to start at the beginning.”

Advocacy begins with a passion. What do you feel strongly about? Who do you feel strongly about? What causes you to spend your time, your energy, your money on? What is the philosophy, situation, need, obstacle, frustration, or joy that gets your blood pumping, that massages your heart.  What is your Something?

Call to action. This is when your “I am for…” can’t sit still, can’t be quiet. You feel the need to do something about your Something, to no longer be a bystander, to shed the sense of helplessness and become empowered through action.

Finding your voice’s comfort zone. Shy? You can voice show your support through passive methods: t-shirts, petitions, e-mails, letter writing, awareness bracelets, attendance at events. Outgoing? Any of the above of course, but add advisory committees, boards, meetings with policy makers, testifying, public speaking (stay tuned for a personal account in the Advocate Series: Speaking Of)

Fortunately, the wheel was invented some time ago. While no one has your unique perspective, skill set, or experience, there is a very good chance that there are other people who are advocating for a similar Something. Find them. Pool your energy. Share your stories. Connect with other advocates—there is strength in numbers.

Advocacy training resources:

Disabilities:  The Advocacy Institute has an online webinar. Note that there is a charge, but you can view past presentations for free for “a limited time.”

Autism: Autism SPEAKS has a tool kit download for families and individuals. You will need to fill out a form to get the link.

Medical: Patient Advocacy Resources is a site with links, books, and guides that can point a patient or patient advocate in the right direction for becoming a better partner in health care.

Lions Club Parade with MDS staff

Lions Club Parade with MDS staff

Advocacy Series: Everybody’s Got Something

EGS Katie

Advocacy begins with a Something. 

We all have a Something, a story. We all have a circumstance that challenges our hearts, our health, our happiness. This is how cliches such as “In everyone’s life a little rain must fall,” and “God doesn’t put anything on your shoulders He (She) thinks you can’t handle,”—this is how these conventions, these pep talks, become cliches.  They are universal beliefs and often doled out by the well intentioned ad nauseam.

There is an event, an illness, a challenge, a disability in each of our lives, or our loved one’s, that sweeps us away from our intended appointment with “normal” and into foreign landscapes. Often without warning, without training, without preparation our paths pivot, sending us careening into the unknown. Things that happen to other people have happened to us. Stares come our way. We become intimate with vulnerability.

Dizzy at first and with unstable footing, we can’t stand still. Restless. Helpless. Frustrated.  But human nature, gut reaction, is survival.

Breathe in, Breath out.

Moment to moment. One day at a time, we chant in our hearts.  We glance into the past at what if, but fact cannot be altered into fantasy no matter how strong the desire or denial. We face forward. The inescapable truth of the future hits between the ribs.

Breath in, Breath out.

Our shoulders hunch, flinch, upon the impact of sympathetic pats on the back, accompanied by universal beliefs voiced with aim to sooth and strengthen. The words give the spirit resolve, even company. We are not alone.

Breath in, Breath out.

The chin lifts.  The sensation of passive victimization fades, and in its place active realization seeps in, an empowering resolve: the need to do something about our Something.

What is your Something?

Toolbox Series: Care Coordination for Caregivers

As caregivers you often do it all–personal care, medical management, bill paying–as well as transportation and domestic duties.   In most cases there are three main differences between you, the family caregivers, and professional care coordinators. Professional care managers:

  1. Educational expertise specific to case management
  2. Emotional AND  physical detachment from that of a direct care provider
  3. A paycheck

–Can’t do too much about the last two, but by using the care management tips and techniques utilized by paid supports, you can make your caregiving journey less stressful and more effective.

WHAT IS CARE COORDINATION?

Care coordination is the management of services and supports. Care Coordinators are the liaison between health care and insurance providers, support systems, and families.  According The CommonWealth Fund, a nonprofit that promotes quality health care, care coordination is the organization of community and health services.

care coordination model

care coordination model

Family caregivers can adopt professional practices by breaking care coordination into manageable steps. After all, time (and sleep) is usually at a premium.

 STEP ONE: ANNUAL ASSESSMENT

  • Evaluate your loved one’s abilities
  • Evaluate your abilities
  • Evaluate your care environment (accessibility; safety; etc)
  • Evaluate financial status (insurance; documents; etc.)
  • Evaluate legal status (guardianship; power of attorney; etc)

STEP TWO:  IDENTIFICATION

  • Medical services (type; frequency; location –home, clinic, community)
  • Mental health supports
  • Community supports
  • Education (on loved one’s challenges)
  •  Circle of support
  •  Funding
  • Advocates (Ombudsman; The Arc)

  STEP THREE: ACTION PLAN

  • Create an Individual Family Support Plan (IFSP)
  • Develop a caregiver team
  • Establish a daily routine for stability
  • Implement recordkeeping
  • Begin “next step” planning (transitions – into/out of school; into adulthood; home to group settings; advance directives; etc)
  • Find yourself supports (groups; respite providers; on-line networks; a clown)

Tools

–          IFSP (adapt to your needs)

–          Medical Home

–          Organization techniques

This is a process. Just begin at the beginning and follow the care coordination road from there. You will need courage and confidence along the way. You already have the heart. yellow brick road beginning

 

Quest for the Holy Label

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like  Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance.  No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile