I feel the need (for so many reasons) to share this one again - eight years later. Seems to me the need is only getting greater.
After many years of teaching, mostly at the elementary level, I retired
and found a second career that I love. I am blessed to be currently
working on a very part-time basis, with lots of needed flexibility, as
an independent provider of services. My "services" mainly involve
supporting people who type to communicate and helping others learn to
support them in their typing. I have had only one elementary school age
client, and the rest are all older teens or adults. In fact, one of my
newest clients is 59 years old, has only recently been introduced to
typing after a lifetime of silence - and is loving her new-found
"voice!"
In the process of making this transition in my personal and professional
life, I continue to learn valuable lessons that I am all too happy to
share. As always, I hope what I have to say might be helpful to others.
and especially helpful to the many adults who have been misunderstood,
or even mistreated, all their lives because the decision makers in their
lives failed to see the person inside.
Recently I attended a social event for folks with disabilities who are
served in day programs in our community. As I looked around, I tried to
picture the young kids who had been my students years ago. What do
THEY look like now? What types of programs are they in? Are they
involved in their communities? Do they have a means of communication?
Does someone in their life know they are intelligent, with thoughts and
feelings just like the rest of us?
For too long now, we have tended to think about autism as a condition of
childhood, probably because it is a label usually given to children,
often between the ages of three and five. Schools didn't really start
admitting these students until sometime after the Education for All Act
was passed in the mid 1970's and the early incidence figure was about 1
in 10,000. Most recently that figure has grown to 1 in 68 of all
children in the U.S. - and for the most part, around the world.
Individuals with Cerebral Palsy, Down Syndrome and other conditions also
tend to have difficulty with communication, and many share a similar
fate of being considered unable to learn/think/feel like their
non-disabled peers (or NT's - for Neurotypicals). Something else they
have in common is they all grow up.
I was in the public school system when children with autism first
started trickling in, and each school that welcomed a non-speaking child
with significant behavioral challenges struggled mightily to figure out
what to do. These were not like the other kids with "special needs;"
their needs seemed to be extraordinarily special! To read about (and
maybe have a laugh or two as you do) my early years, check out Carla's story.
I remember many meetings where professionals sat around big tables and
tried to cobble together a program that would meet the needs of one
individual with "severe" autism, sometimes but not always involving
those who knew that child best - the parents. These were the GOOD
schools, who had a school psychologist, speech therapist, occupational
therapist, physical therapist, special educator and paraprofessionals
who cared and wanted to do what was best, to provide whatever level of
support each particular student might need. Other schools stumbled
along, trying to make that extra-special student fit into an existing
model. Just take a guess as to how successful those programs were!
Now I see a tsunami of extra-special young people leaving the public
schools and entering the vast wilderness of adult services. It is
unfortunately happening at a most inopportune time, as budgets are cut
and services are strained to the max. It might seem to be helpful that
many people are seeking employment and may be willing to give a
relatively low-paying job a try. But I see this as a huge part of the
problems that arise.
The existing models of adult services aren't going to meet the needs of
these folks. Sure they need food, shelter, safety and other basics.
But we fail them terribly when we treat them either as nursing home
patients in need of care, or children in need of training. They are
competent adults, with thoughts and feelings just like the rest of us,
and they need and deserve our respect as we work with them to continue
their progress towards the greatest level of community inclusion,
independent living and intellectual stimulation possible.
We have moved away from putting people into institutions - a huge step
forward, and one that claims to be economically sound as well. But life
in the community requires more than sharing an apartment or house with a
roommate or two and paid staff, around the clock if needed. There must
be job opportunities, recreational activities, social interactions,
meaningful learning options, and most of all, direct care staff who
understand how important all of these services are.
When we hire workers at close to minimum wage, with few or no benefits.
and ask only that they pass a background check and are willing to give
this a try as a career, we are asking for trouble. The good ones won't
stay and the others are totally unprepared for what is being asked of
them. Workers mean well, and try their best, but often they have no
background in the field of disabilities, are given little or no
training, and are expected to provide support to a very needy person who
is unable to speak, with virtually no oversight. For hours on end,
they are the one in charge, making critical decisions as to how a
particular situation should be handled, and struggling to know how to
interact with a person who may need total care and has no way to
communicate.
Sometimes I am called in to help staff learn about Facilitated
Communication so they might be able to interact in a more meaningful way
with their clients. I welcome these opportunities, but all too often
realize I have to back way up and share basic information about
neurological differences, motor problems, sensory issues, and the
unimaginable frustration of being unable to speak - leading to a
lifetime of being underestimated and misunderstood. Communication is a
critical piece of the puzzle, but every piece is critical when the needs
are so great.
We need a new model; the people we serve deserve better. And if we can
find a way to meet their needs throughout their lifetime, we will all be
in a better place. It is worth the effort.
