LINKS
An ANCOR publication of private provider practice and federal policy issues
May 2011 • Volume 42 •
Number 5
www.ancor.org
How to Empower Your Agency
The Big “C” Word of the Century: Collaboration
By Bonnie-Jean Brooks
ANCOR Foundation Board of Directors
A
NCOR members, particularly those of us
who are environmental scanners, began to
hear more and more about the value and critical
importance of collaboration in a big “C” way
as the new century began to unfold.
ability, mental health, substance abuse, crisis,
homeless, hospice and physical health services
to people across the age spectrum.
We recognized that although the government
was experiencing chaos and uncertainty, it
was also expecting more accurate and timely
reporting. We knew that we needed to enter
the electronic age quickly and fully for other
reasons, including heightened competition,
When we study the term “collaboration,” we
risk management, diminished funding bases,
learn that collaboration is a cooperative arworkforce shortages,
rangement in which
and ways to build in
two or more parties
checks and balances
work toward a comThey collude, they confide, they
assure that we are
mon goal. We hear
collaborate, and they celebrate that to
in compliance with
that it is a knowledge
they are on the same team even
a very complicated
management tool—an
Medicaid system
effective method of
though they work for five
transferring knowldifferent nonprofits. The same is that is fraught with
audits of all kinds.
edge among individutrue throughout this collaboration.
als—and it becomes
Some of us had
critical to creating and
purchased an offsustaining a competithe-shelf electronic medical record (EMR) that
tive advantage. Many of us are learning that
was inadequate, and we discarded it. Others
collaboration is a form of social organization
had not purchased an EMR at all because of the
that is rapidly growing in these times of crisis,
immense cost of purchasing a software product
conflict and chaos.
and having it customized to meet the unique
needs of the diverse service populations and
Collaboration enables systemic change and
reduces the individual sense of personal/organi- the ever-changing state requirements.
zation powerlessness. Collaborative efforts are
As we sat and talked, we came to the realizarising as an effective form of organization for
tion that not one of us had the money or ability
social change to deal with pressing issues that
to ascertain what we needed, to locate it and to
affect many people.
negotiate with a software company to customize it to meet our needs. Before long, we came
A Meeting of Minds
to the conclusion that there is strength and
power in numbers.
It was with this in the back of our minds that
five diverse Maine social service agencies
Making or Breaking
began to venture into collaborative talks nearly
six years ago. While we are competitors, we
We realized right off the bat that we were not
also have had a healthy respect for one another
competent enough to identify all of the elements
over the years. Together, we provide a huge
array of services covering more than two-thirds and functions we would collectively need in a
robust EMR. We identified a project manager
of the geography of Maine—primarily in refrom Chicago to help us, and it turned out that
mote, rural places. We provide intellectual dis-
this was the single best decision we made—the
“make or break” of this successful project.
He helped us identify the detailed elements we
needed, including the absolute non-negotiables.
He developed a request for proposal that we
sent out nationwide and narrowed respondents
down to six. From there, our collaborative
chose four companies to interview.
Finding the Best Fit
Our consultant developed an agenda for each
candidate to deliver a two-hour introduction
to their product. The respondents came from
Hawaii, Pennsylvania, Florida and Arizona to
Maine. Each collaborator had 2–5 members
present for the interviews. We scored, we vetted,
we deliberated, we weighed and balanced, and
in the end, we chose two software companies to
visit: one in Phoenix and one in Philadelphia.
Each of our five agencies sent a team of 5–7
people to each of these sites. The teams from
each collaborator included billing/finance,
See The Big “C,” page 5.
Inside this Issue of LINKS:
For more articles on how to be
empower your organization, see pages
7, 10, 11, and 16.
Learn how to communicate on the
state level on page 21.
To learn why now is the time to
innovate, see the State Association
View on page 23.
President’s Corner
How to Cope with Changes Ahead
By Wendy Sokol
ANCOR President
W
elcome to ANCOR’s “How To” issue of
LINKS. This is the issue where you will
learn about products, services, supports and
resources that will make you want to cry out,
“Thank you ANCOR!” I hope that this issue
brings a smile to your face and provides you
with at least one great solution to your “how
to” problems.
In light of the theme, I thought I might share
with you some helpful information regarding
“how to” manage one of the most difficult
hurdles facing agencies during this recession—
rate cuts—and how to begin to embrace the
new reality of Medicaid services.
News of funding cuts is often received by providers in a very similar manner that we receive
news of any extreme loss. Many of us will
grieve the loss of the “good ole days.” We may
feel shock, and we may even recognize that we
and our staff are experiencing some of the five
stages of grief and loss.
It is important that you recognize these stages
in yourself, your Board of Directors, your management and your direct support workforce,
because with knowledge, you can become better equipped to help the people in your agency
cope with the feelings of loss and move through
them so that you can take the necessary action to
address the cuts, plan for serious changes to our
service delivery system and ensure the longterm survival of your agency.
The five stages—denial, anger, bargaining,
depression and acceptance—are a part of the
framework that, with knowledge, creates tools
to help us frame and identify what we and others may be feeling. But they are not stops on
some linear timeline in grief. Not everyone goes
through all of them or in a prescribed order.
Stage One: Denial
If you receive formal notification of a rate cut
and you decide to take a few days to process
the information but you find the days turning into weeks, you may be in denial. If you
receive formal notification and feel numb but
know that you have to do something so you
begin planning an education campaign of your
local elected officials, you may be in denial.
Denial could be likened to watching someone
suffocate and slowly turn blue but being unable
to take action. When someone is suffocating,
you need to immediately move to action and
begin CPR. An extended period of denial and
a failure to move to action could have tragic
ramifications that will result in the suffocation
of your agency.
Wendy Sokol
Dr. Elisabeth KГјbler-Ross (who introduced
the now-famous Five Stages of Grief) will tell
you that this first stage of grieving actually
helps you to survive the loss. She would say
it helps you to pace your feelings of grief and
that there is a grace in denial. It is supposedly
nature’s way of letting in only as much as we
can handle.
I will tell you that you have a finite window
to take action, so get over the denial—suck it
up and move to action. If you are the CEO or
President of your agency you do not have the
See Five Stages, page 3.
Contents
Inside This Issue of LINKS
2
President’s Corner
Partnerships
1
7
9
10
11
16
17
20
2
How to Empower Your Agency
How to Get the Most From Your ANCOR Membership
How to Create Your Own “AdVanture”
How to Master a Meeting With
Congressional Offices
How to Get the Most Out of the ACC
How to Implement Performance
Excellence
How to Provide Better Health Insurance
How to Advocate at the State Level
LINKS
Wage and Hour Guidelines
14 Child Labor Rules Specifically Restrict Some
Work Activities of 14 and 15 Year Olds
State Association View
22 When in Crisis—Innovate!
NAC Central
12 Get Ready for DSPs to DC
General
17 News and Notes
18 The Riot! Joins CDS Curriculum
May 2011
Five Stages, from page 3.
luxury of grieving. Recognize the signs, accept
them and move on.
Stage Two: Anger
notification of the cuts that they too are to move
through their anger by experiencing the pain and
immediately move to the next stage of grieving.
Anger is a natural response to the news of
cuts. The reality is that for most agencies, our
wages and ERE account for 75% to 90% of our
budgets, depending on how many cuts we have
already experienced. For many providers, there
is no fat left in the system and the only choice
we have is to pass the cuts on to our workers.
If you find yourself itching to yell profanities
at your elected officials or at representatives
of state government, you may be experiencing
Stage Two, Anger. Kubler-Ross will tell you
that anger is a necessary stage of the healing
process. You have to be
willing to feel your an...With knowledge, you can
ger, even though it may
become better equipped to
seem endless. She would
say that underneath your help the people in your agency
anger is pain—your pain. cope with the feelings of loss...
How you communicate
information on the cuts and
other changes to the service delivery system will
directly correlate with the
type of response you will
receive from your workers
and from the people to
whom you offer supports.
If you notify your direct
care workforce by mail,
I could predict that your
staff will rapidly move
past denial and become
absorbed in Stage Two.
so that you can take the
It is natural to feel desertnecessary action to address
ed and abandoned when
you have been hit with
the cuts, plan for serious
the news of the cuts on
changes to our service
the same week that the
delivery system and ensure
day program van blows
an engine; the IT departthe long-term survival of
ment announces that
your agency.
the new server will cost
$80,000; you receive a
Having successfully mansubpoena to provide the last 10 years of emails
aged this unpleasant task in my own agency, I can
regarding XYZ; and you can’t get your local
tell you that it is critical that you notify in person.
DDD representative to even return a call. But
At Soreo, the owners notified 1,000 workers in
like a good CEO you suck it up.
three counties and in three different languages
The problem is that you cannot put out an official edict to your staff that when they receive
The American Network of Community Options and
Resources (ANCOR) was founded in 1970 to provide
national advocacy, resources, services and networking
opportunities to providers of private supports and
services. LINKS provides a nexus for the exchange
of information, ideas and opinions among key
stakeholders.
National Office Staff
RenГ©e L. Pietrangelo
Chief Executive Officer
703.535.7850, ext. 105
rpietrangelo@ancor.org
Cindy Allen de Ramos
Finance Manager
703.535.7850, ext. 102
cramos@ancor.org
Alexandra Bradley
Communications and Marketing Specialist
703.535.7850, ext. 106
abradley@ancor.org
May 2011
over a 10-day period. Your employees must feel
and understand why they are being cut, who man-
Jocelyn Breeland, APR
Director, Communications and Marketing
703.535.7850, ext. 111
jbreeland@ancor.org
Dana Calisi
Office/Data Entry Coordinator
703.535.7850, ext. 101
dcalisi@ancor.org
Suellen Galbraith
Senior Public Policy Advisor
703.535.7850, ext. 103
sgalbraith@ancor.org
Mary Pauline Jones
Government Relations Assistant
703.535.7850, ext. 108
mpjones@ancor.org
dated the cuts to your funding and that you and
your company are being fair with the implementation of the cuts.
They will feel anger because it creates a necessary structure for their grief. You can effectively
redirect that anger back into action by getting
them involved in educating their legislative representatives regarding the critical nature of the
services that your provide and the serious and
negative impact that cuts have on the workforce
and eventually the quality of care.
Our company’s slogan is “Don’t Let Budget Concerns Outweigh Human Concerns – No More
Medicaid Cuts.” If you do not find a healthy
avenue to redirect the anger, it will manifest itself
and could be directed at you or your agency.
Stage Three: Bargaining
Bargaining is when you become lost in a maze
of “If only…” or “What if…” statements. You
want life returned to what is was. If you think
you might be caught in “bargaining,” then go
back to Stage One and review the information
on denial.
We are in a recession. In our analogy of a person suffocating, all the bargaining in the world
will not restore the flow of oxygen or create a
fairy godmother who can implement CPR.
See Five Stages, page 5.
Jerri McCandless
Director of Member Relations and
Board Development
703.535.7850, ext. 107
jmccandless@ancor.org
Marsha Patrick
Director of Resource and
Revenue Development
703.535.7850, ext. 110
mpatrick@ancor.org
Jessica Sadowsky
Director, Government Relations
703.535.7850, ext. 104
jsadowsky@ancor.org
Tony Yu
Director, Web and Information Technology
703.535.7850, ext. 109
tyu@ancor.org
3
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LINKS
May 2011
The Big “C,” from page 1.
quality assurance, clinical, CEOs, human
resources, and professional development personnel, accompanied by our consultant.
We visited each site for three days. The various
disciplines went as teams and visited providers
in the area using the product. The clinical people traveled out together, the CEOs visited the
corporate headquarters to meet with investors
and owners, and so on. We also “traveled” by
teleconference to providers in other parts of the
country using the proposed products. A group
traveled from Phoenix to Rhode Island, before
going home, to visit a provider in the east using the software from the west. We wanted to
make sure if we chose a company in the west,
it could provide the top-notch customer service
we needed.
In the end—and with the use of a very complex
scoring mechanism—we unanimously chose
ClaimTrak of Phoenix. Then the negotiations
began. From August to February we talked…
and talked…and talked!
Orchestrating Partnerships
Between the strategies used, the statistical
analyses used, the steady work of our consultant, and the formulas we decided upon to
decide which agency would pay is certainly a
long dissertation in itself, suffice it to say that
we entered into the contract—and now own a
wondrous EMR—that we could never have afforded as one agency. The savings to each of us
can be counted in the hundreds of thousands.
A coup d’etat of sorts, our collaborative was
able to negotiate with ClaimTrak that it would
not sell its product to another provider in Maine
unless the provider joined our collaborative.
As a result, we now have several interested
providers who will be joining us. Each will
pay a one-time fee to join the collaborative,
based on certain factors. Once the provider
joins us, it will then negotiate with ClaimTrak
to determine what it will pay for the EMR.
This will be dependent on such things as
number of sites, concurrent users, number of
services and so on. Although this project has
been expensive, we fully expect to recoup all
of our start-up costs and to actually begin to
profit on our collaborative.
Fostering Implementation
The implementation is close to fruition more
than a year later. The billing representatives
meet once a week as do their respective colleagues in the other target areas. The electronic
communication tools we are using in the implementation are innovative. Within a year, we
have been able to get ClaimTrak to build out a
May 2011
system that will accommodate the needs of all
of these diverse populations.
We are told that our collaborative may be a one
of a kind in the country. One of the five agencies contracted directly with ClaimTrak (so it
would only have to deal with one entity), we
are all equal partners.
In the process of implementation, each agency
has formed a bond that is beyond what anyone
could have imagined. When our billing person
has a problem, he calls the billing people from
four other agencies. They collude, they confide,
they collaborate, and they celebrate that they
are on the same team even though they work
for five different nonprofits. The same is true
throughout this collaboration. We have agreed to
provide trainers for each other when someone is
more skilled in a function than someone else.
Gaining Recognition
Our collaborative is being recognized by state
health technology information systems and entities. Maine HealthInfoNet, a federally funded
entity that successfully integrated the health
information systems of the major hospitals of
Maine is now interested in working with our
collaborative to integrate the unique type of information embodied in our services. Doing so
will help assure that, by using the technology
developed for our collaborative, all residents
of Maine who go to a major hospital will
have their information available at hospitals
throughout Maine.
This unique collaboration has resulted in
grants from foundations because of their belief
that collaborations are essential for the future
of nonprofits. We are—at the state level—a
model for others to seriously consider. The
bottom line for all of us is that we are all richer
because we had the fortitude, patience and
wisdom to spend time to develop a level of
trust that we knew would result in greater and
higher quality supports for the people we serve,
individually and collectively.
This collaboration is something very unique,
very awe-inspiring and the most rewarding
partnership effort in which I have engaged in
my lifetime of service. It is all that the gurus
speak of—powerful in a solitary world, has
led to systemic change and has been necessitated by this time of crisis, conflict and chaos.
In the greater sense, it is about “us” and not
“we and them.” Five competitors have become a team, despite this very difficult world
of “dog eat dog.” 
Bonnie-Jean Brooks is CEO of OHIMaine.
She is a member of the ANCOR Foundation
Board of Directors. OHI is a participant in
the Performance Excellence Initiative. Bonnie
may be reached at bbrooks@ohimaine.org or
207-848-5804.
Five Stages, from page 3.
If you are reading LINKS, you are probably
the person who will be responsible for loosening the constraining and unnecessary garments
that are suffocating your agency and beginning
to breathe life back into it to help reduce the
constriction of oxygen into your agency. You are
also the person who understands that after the
recession, after the cuts, after this reality, there
will be a new world order and Medicaid services
will never return to the good ole days.
It is your job to get better educated and consider
all the possibilities of the potential new world
order. Is the new reality going to include block
grants, managed care or some other paradigm?
Stage Four: Depression
After bargaining, our attention moves squarely
into the present. Empty feelings present themselves, and grief enters our lives on a deeper
level. The reality of the long-term cuts is
obvious. We can see the impact on our staff and
know that it will impact the quality of the services that we deliver; the “suck it up” mantra
stops being effective.
Stage Five: Acceptance
This stage is about accepting that our old way of
business is gone and recognizing that this new
reality is the permanent reality. We can never
replace what has been lost, but we can create
new methods for service delivery and form new
partnerships and new inter-dependencies.
Instead of denying our feelings and the feelings
of our staff and the people to whom we offer
supports, we listen to our needs and to their
needs; we move, we change, we grow and our
agencies and service delivery models evolve.
We reach out and seek support through tried
and tested relationships that we have learned
can be trusted—relationships like those we have
formed through our membership with ANCOR.
We reach out to become better educated so we
can understand the new paradigm. I invite you
to reach out to your fellow ANCOR members
and to actively begin your education of the new
paradigm by attending the ANCOR conference
this June, as well as the Managed Care Summit
that ANCOR is sponsoring this fall.
Part of the process of healing is to recognize
you are not alone. Thousands of ANCOR
members are facing the exact same challenges
as you, and together we will survive, our
service delivery models will evolve and we
will continue to make a positive difference
in the lives of the people to whom we offer
supports.пѓ‚
Wendy Sokol is CEO and co-owner of SOREO
In-Home Support Services. She can be reached
at wendy@soreo.com.
5
For more information, contact Ross Setlow at 800.595.9768 or
Aflac4ancor@aflacny.com.
6
LINKS
May 2011
How to Get the Most From Your ANCOR Membership
Y
ou’ve paid your dues and now you’re ready
to start reaping the benefits of ANCOR
membership. Some of the benefits, like
ANCOR’s tireless advocacy on behalf of
community providers, come to you without
any action on your part. Other benefits require
some action on your part. We encourage you to
act now to increase the value of your ANCOR
membership.
Savings
ANCOR offers numerous savings programs,
and some members find that these benefits
alone pay for the cost of their ANCOR membership. Take a moment to make sure you
aren’t letting a golden opportunity pass you by.
Shared Resources Purchasing Network: The
SRPN is ANCOR’s buying plan that offers significant savings on items you’re already buying. Some, such as the U.S. Bank AccelaPay
card, can improve your operating efficiency.
These savings, where appropriate, are available
to your employees and the people you serve.
Find out more and activate your participation by visiting the ANCOR website here. For
questions and additional information, contact
Marsha Patrick.
The College of Direct Support (CDS): CDS
offers a wide range of high-quality online
training programs for professional development and career advancement of your direct
support workforce. CDS training can reduce
your training costs and improve retention rates
in your organization. ANCOR members enjoy
savings of 25%. To find out about the ANCOR
Foundation partnership with the College of Direct Support and the ANCOR Member Buying
Pool, contact Bill Tapp at 1-877-353-2767 (toll
free) or email him.
centered excellence. The CQL Focus Forum
provides an organization-wide facilitated
evaluation of person-centered supports and the
impact of those supports on the personal quality of life of the people receiving them. The
result is a concrete and specific organizational
action plan, broken out into individual and
team responsibilities, time lines and measures
for success in increasing person-centered
services. ANCOR members receive a 20%
discount. For more information contact Beth
Mathis at 410-499-6044.
Essential Learning: Essential Learning offers
continuing education and professional development courses, including clinical, compliance
and management topics, to help professionals
meet their organization, regulatory and professional licensing requirements. ANCOR member organizations and their staff receive a 10%
discount on all courses. To learn more about
Essential Learning’s Online Staff Training
Solutions, please visit www.EssentialLearning.
com or email. For questions and additional
information, contact Marsha Patrick.
And coming soon: ANCOR is partnering with
the Stephen R. Covey Center for Leadership
to offer ANCOR members and online version
of the extremely popular “7 Habits of Highly
Effective People” training program. Look for
details in the future about how you can get access to thousands of dollars worth of training at
a fraction of the cost.
The Council on Quality and Leadership (CQL):
ANCOR has partnered with CQL to offer
the CQL Focus Forum to ANCOR members
interested in exploring ways to increase person-
ANCOR Connected Community (ACC)
This is the future of association communication. More ANCOR members are logging on to
the ACC every day to seek and share important
See Getting the Most, page 8.
States Incorporating Telecare into Medicaid Waivers
Almost 20 percent of states have, or plan to, incorporate Telecare
services into their HCBS Waivers in 2011. Here’s why:
Benefits Providers/States:
• Provides cost savings
• Addresses waiting lists
• Enhances productivity
• Stretches support budgets
• Assures quality
Rest Assured В®
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Lafayette, IN 47904
877.338.9193
Ext. 345
Benefits Individuals
• Independence
• Safety
• Family involvement
877.338.9193 www.RestAssuredSystem.com
May 2011
7
Getting the Most, from page 7.
information and collaborate. It’s a great way to
find out how providers across the nation are
addressing the same challenges you face or to
share your ideas with others who might benefit
from them. (See the ACC article in this issue of
LINKS for details.) Visit the ACC today and see
why we call this the future of association communications.
ANCOR Governance
Many of the ANCOR programs you read about
are lead not by ANCOR staff, but by leaders
such as yourself from ANCOR member organizations. The Board of Directors, the Board
of Representatives and a host of issue-specific
committees and other groups all play a critical
role in the direction of the association and the
specific programs and activities we offer. It’s
an opportunity for you to have even greater
effect on your association, today and into the
future. To find out how you can get involved,
contact Jerri McCandless.
What Members Are
Saying About the SRPN
“ANCOR’s SRPN program—
Recycle for ANCOR by BSC
Recycling Specialists,
which encourages recycling of
e-waste items—costs us nothing
and is a great way to
help protect our environment.
It has great potential for real
community involvement
with those we support, as well
as recognition of our ResCare
programs for doing
something good for their
community. Also the money it
generates is being used
for special programs for our
employees and those we support.”
—Larry Weishaar,
ResCare VP of
Customer Relations-Quality
8
LINKS
Conferences
ANCOR conferences are an important way
to learn about leading practices and the latest
developments in service delivery, leadership
development and public policy.
This year, ANCOR will host two conferences.
The 2011 Conference: Leading Cultures of
Innovation and Advocacy takes place June 5–8
just outside of Washington, D.C. This event is
packed with informative sessions delivering
tangible takeaways of value to your entire organization. Read about the conference sessions
and register to attend by visiting here.
On October 14, ANCOR is hosting the third annual Technology Summit in conjunction with the
Coleman Institute Conference on Cognitive Disability and Technology in Challenging Economic
Environments (October 12–13). This event—held
in Westminster, Colorado—offers providers a
chance to meet with the leaders in technology development, to learn the latest trends in technology
and to shape the future of innovation.
ANCOR
Welcomes Its Newest
Member:
Individual Expressions,
Inc.
ANCOR has the answers when you have
questions about federal issues and regulations, what’s happening on the Hill and how to
contact or influence your member of Congress.
Contact Jessica Sadowsky for assistance.
This year, the Coleman Institute will have a
Wage and Hour Guidance
one-day event bringing together academics,
family members and community service providFormer ANCOR CEO Joni Fritz is a Labor
ers to discuss the unique role technology plays
Standards Specialist whose guidance is free
in fostering independence for individuals with
to ANCOR members. Any
cognitive disabilities. The
ANCOR member who wishes
The
way
to
make
sure
Coleman Institute will
to make arrangements for
offer a pre-conference
your
entire
staff
learns
consultation or workshops with
hosted by the University
should contact Jessica
of Colorado. Look for
of ANCOR programs Joni
Sadowsky, ANCOR Director of
more information about
and activities that Government Relations, for a rethe Coleman Institute
ferral at (703)535-785, ext. 104.
and ANCOR Technology benefit them is for you
Summit in future LINKS
Get Your Staff Involved
to make the
articles.
ANCOR is working hard to
connection.
For more information,
provide value for your entire
contact Debra Langseth.
organization. To do this, we need to reach
employees throughout your organization.
Performance Excellence Initiative (PEI)
Yes, your CEO, CFO, CIO and all the C-level
folks, but also your procurement, HR, and IT
PEI is ANCOR’s groundbreaking benchmarkmanagers, the communications, marketing and
ing program. We’re using data to identify
community relations folks, and absolutely your
leading practices in areas such as retention,
DSPs. The way to make sure your entire staff
medication administration and satisfaction of
learns of ANCOR programs and activities that
people served and their families. And now, the
benefit them is for you to make the connection.
ANCOR Board has announced that ANCOR
You can:
members who have not participated in the Performance Excellence Initiative in the past may
• Forward and share ANCOR emails,
do so at no cost for this year. (This represents a
including LINKS.
savings of $1,000 for members).
• Encourage staff to get on the ACC and
participate.
Find out how empirically sound, culturally sen• Send ANCOR the list of contacts and
sitive data can help you evaluate and improve
emails for your organization.
your organization’s performance, cut expenses,
demonstrate your advantages over other proIf your CEO or executive director is the only
viders and inspire innovation. To schedule a
one active in ANCOR, then you’re missing
one-on-one demonstration to learn more about
out on a lot of potential benefits. And now
this project, contact Debra Langseth.
with the ACC, we have the potential to offer
even more value to member staff. Get everyone involved today.пѓ‚
Technical Assistance
May 2011
How to Create Your Own “AdVanture”
By Melissa Temkin
A
s a registered drama therapist, Kareen King
dedicates her life to creating therapeutic,
theatrical experiences for people with disabilities
and others who live in long term care settings.
An example of these programs is AdVantures, an
outing in which Kareen partners with community groups to transform a bus ride into a “traveling theater of discovery” for participants.
The following is a synopsis of Kareen’s “The
Three Billy Goats Gruff Tour” AdVanture and a
“how to guide” for you to create your own special experience. These outings are stimulating,
fun and educational for participants and are
easy for staff to plan with a little community
outreach and a healthy dose of creativity.
Kareen thought of creating the Billy Goats
AdVanture when she heard from colleagues
that they owned and/or knew of community
members who own goats. These goat owners
agreed to be a stop on the Billy Goats tour. To
prepare for the trip, Kareen researched stories
that relate to goats and found a famous old tale
called, The Three Billy Goats Gruff.
One of the tour’s stops was at the country home
of a certified nurse’s aide (CNA) who works
with Kareen. This CNA gathered her goats in
May 2011
the front yard so that participants could interact
with and learn about them—and she even
brought a billy goat onto the bus for additional
“introductions.”
In the meantime, Kareen handed out large print
versions and did a dramatic reading of The
Three Billy Goats Gruff story, inviting audience participation throughout the reading. She
also displayed an enlarged picture of the Ugly
Old Troll, a character in the tale, as she read.
At another time during the tour, Kareen sang
verses from the Bill Grogan’s Goat book and
invited participants to fill in rhymes.
•
•
tional activity, visits with program leaders, tours of their properties, etc.
If your facility does not own a large van/
bus to transport participants to these activities, reach out to local bus companies
to see if they will donate their services
for a day. An article about the activity
in the local paper—and the gratitude of
participants—would probably suffice as
payment for their services.
Incorporate fun, applicable activities during
the bus ride. For example, reading stories
about animals on the farm, singing Broadway songs on the way to a theater tour, etc.
During this and other AdVantures, Kareen
has learned the importance of stimulating as
many of the participants’ senses as possible;
especially in light of the variety of physical and
cognitive limitations that many face.
In short, these AdVanture activities are easy to
create by building some community partnerships and thinking “outside the box.” Most
importantly, they are enriching, stimulating
activities for participants.
To create a similar AdVanture experience for
the individuals with disabilities with whom you
work, consider the following steps:
You can learn more about Kareen’s work at
the American Health Care Association’s DD
Day educational event on September 18, 2011,
where she and other speakers will present on
issues that affect disabilities services providers. For more information about Kareen
King, go to www.kareenking.com. For more
information about DD Day and to register for
the event, click here or contact Melissa Temkin
at or 202-898-2822.
•
•
Get a gauge of the resources and fun
activities in your area. Are there nearby
farms, theater groups, art programs, etc.?
Contact individuals who are involved
in these activities and ask if they would
speak with the people with disabilities
who you work with. Suggest an educa-
9
How to Master a Meeting with
Congressional Offices
By Mary Pauline Jones,
ANCOR Grassroots Manager
C
itizens naturally hope that their members of Congress will act in a
manner similar to their personal beliefs. Unfortunately, citizens often
fail to do anything to influence their members of Congress, because they
fail to realize how much influence they have over their elected officials.
An in-person visit is a simple way to effectively influence members of
Congress. The Congressional Management Foundation reported that when
a representative/senator has not already reached a firm decision on an issue,
97% of them will be influenced by an in-person visit from a constituent.
ANCOR MEMBERS —
MARK YOUR CALENDARS!
An in-person visit doesn’t have to be with the member himself. In fact,
you don’t even need to travel to Washington, D.C. Members of Congress
have district offices designed to allow them to more easily communicate
with their constituents.
If you have any issue you want your members of Congress to act a certain
way on, schedule a meeting with them or their staff. This meeting does
not need to be intimidating. Executing a successful meeting uses the same
principles you would use in any meeting.
Here are five points to remember when in a meeting, regardless of the topic:
Alliance for Full Participation
Summit 2011
November 17 – 19, 2011
Gaylord National Harbor Resort
Washington, DC
Representatives from fifteen national disability organizations,
including ANCOR, have united behind the common goal of
doubling employment for people with disabilities by 2015.
* American Association on Intellectual and Development
Disabilities (AAIDD)
* American Network of Community Options and Resources
(ANCOR)
* APSE: The Network on Employment
* The Arc of United States
* Association of University Centers on Disabilities (AUCD)
* Autism Society of America (ASA)
* The Council on Quality and Leadership (CQL)
* Human Services Research Institute (HSRI)
* National Association of Councils on Developmental
Disabilities (NACDD)
* National Alliance for Direct Support Professionals (NADSP)
* NISH
* The National Association of State Directors of
Developmental Disabilities Services (NASDDDS)
* TASH
* United Cerebral Palsy (UCP)
Stay on message.
One of the easiest and most common mistakes is to stray away from the
message you want to deliver. Sometimes, the member or aide may even try
to drag you “off message” with questions about topics that are unrelated
to your issue. Be prepared for this. Rehearse the meeting beforehand and
make sure everyone understands the importance of staying on message.
Identify your “ask.”
When you meet with the member or staff, it is easy to spend a considerable amount of time explaining who you are and giving background
information about your issue—but remember, the most important part of
your visit is the “ask.” Tell them what it is you want them to do. There are
several “asks” you could use: voting for/against legislation, writing a letter
on legislation, sponsoring legislation, etc.
Be cognizant of time.
A meeting with staff will often only last for 20 minutes, and a meeting with the member himself will be even shorter. Be cordial, but move
through introductions quickly and do not spend too much time with personal anecdotes. It is important to make sure the staff or member understands what you are saying, but be careful to not repeat yourself.
Tell the truth.
This is the simplest rule to remember—and it has the most consequences
if you forget it. Simply exaggerating or making misleading statements is a
bad idea that can damage your credibility and that of your organization. If
you do not know an answer, do not try to fake it. Offer to follow up with
the unknown information after the meeting.
Effectively wrap up the meeting.
Many times, people will come away from a meeting with a member or
staff still unsure what was agreed to or how the member will vote. To
avoid this, recap anything that was by the member or staff at the end of the
meeting to ensure you and the member/staff are on the same page. This
usually involves going over your ask again. The member or staff may be
evasive not answer your question directly. Be prepared for that and make
them answer yes or no, or even “I’m not sure.” Ensure you fulfill any tasks
agreed to on your end. пѓ‚
10
LINKS
Summit Program. The Summit program will include an
innovative blend of programming and networking
opportunities centered around a common framework of:
•
•
•
•
•
•
Establishing a Vision and Clear Goals
Learning from Employers and Employees about
What Works
Service Innovations
Creating Incentives and Removing Barriers
Collaboration
Building Community Partnerships
Sponsorship Opportunities: The Alliance actively seeks
public and private partners to assist in achieving our goals.
Many sponsorship and exhibiting options are available.
Contact Carol Walsh, walshworks@verizon.net
For more information, including how you can get involved,
visit the Alliance website:
www.allianceforfullparticipation.org.
May 2011
How to Get the Most Out of the ANCOR Connected Community
T
he ANCOR Connected Community
(ACC) is a powerful resource for ANCOR
members, making it easy for you to network
(a major benefit of association membership)
and collaborate with other providers across the
country.
How can you get the most benefit from the
ACC? By using it.
Visit http://ancor.connectedcommunity.org and
log on. (If you don’t already have an ANCOR
password, or you’ve forgotten yours, you’ll
have to get one here.) From the ACC homepage, you’ll be able to see the latest news from
the Washington Insiders Club (WICs), a list of
upcoming events, and the latest discussions and
blog posts.
Complete Your Profile
Once you’ve logged in, use the welcome link
in the upper right-hand corner to see and update your profile. It only takes a few minutes to
select the appropriate choices. Then, notice the
matrix at the bottom of the page. The ACC has
automatically created a network that includes
other members with similar job title, duties and
interests. For more information about creating
your profile, read this document.
Join a Discussion
Select “Discussions” from the top navigation
May 2011
bar and choose “My Subscriptions” to view
a list of the discussion groups you can join.
Subscribe to a group by selecting a notification preference. Real-time sends you an email
notification whenever there’s a new post in the
group. Daily digest means you get only one
email per day listing any posts for the last 24
hours.
Make It Yours
For more details about establishing your message signature and joining a discussion, read
this document.
Involve Your Whole Agency
Create Contacts
Select “Directory” from the top navigation bar
and then “My Contacts.” From the resulting
screen, you can search for people you know and
add them as contacts. Your contact list is like
a directory that makes it easy to communicate
directly with people you know. For detailed
instructions on adding contacts, read here.
Interact With Conferences/Webinars
For every conference and most webinars,
ANCOR creates a community, complete with
discussion group and library in the ACC for
participants. Use the library to post and access
related documents and handouts. Use the discussion group to continue the conversation after an
event such as a webinar.
Anyone on the ACC can create a new community and start sharing, networking and collaborating with others. If you don’t see a community for a subject of interest to you, you can start
one yourself. Contact Jocelyn Breeland or Tony
Yu for help in setting up a new community.
The ACC makes it easy for your entire organization to benefit from ANCOR membership. For example, there’s the Communication
Forum for staff responsible for public relations,
marketing, development, media and community relations. There’s a Human Resources
group for HR managers. There’s a DSP group
for Direct Support Professionals.
Each of these communities creates a forum for
discussion and exchange. It’s an easy, no-cost
way for your staff to get answers to questions,
share ideas and get support from the ANCOR
network. But it will only work if we get people
from each of these groups to actively participate in the discussions.
Share this message with your entire staff and
encourage them to participate. And let us know
if there’s anything we can do to help you get
the most from the ACC. We’re here to help.
11
NAC Central
Get Ready for DSPs to DC 2011 and The Rally for Community Living
A
s part of the ANCOR
2011 Conference: Leading
Cultures of Innovation and
Advocacy, ANCOR will again be hosting its
4th annual DSPs to DC event!
•
DSPs to DC will take place June 6–8 and
provide DSPs with professional development
seminars, advocacy best practice sessions,
and opportunities to network with peers. The
event culminates in “The Rally for Community Living” and Capitol Hill visits on
June 8, where DSPs can make the case for a
well-paid, professional workforce directly to
lawmakers.
While in DC, DSPs will have the opportunity to collaborate and to connect with each
other informally—and in a facilitated session
called “DSP Forum: Taking Our Work to a
Deeper Level.” The forum will encourage
DSPs to share their stories of success, near
success, and even failure, with a focus on
how Direct Support Professionals can work
with intention.
Sending members of your DSP staff to DC is
one way you can show appreciation for your
outstanding DSPs. Give your DSPs an experience they’ll never forget—and they’ll return
home energized and armed with the tools to
increase their effectiveness on the job.
DSP voices strengthen ANCOR advocacy. We
look forward to a large gathering of DSPs at
“The Rally for Community Living” on Capitol
Hill, where we’ll speak out on the importance
of the providers and DSPs that are the essential
bridge to community living for people with disabilities. The rally begins at 10 a.m. Be sure to
schedule your visits with members of Congress
after the rally!
DSPs in D.C. will learn with fun, informationpacked sessions, including topics like:
12
LINKS
•
•
Communicating with Congress: You Can
Make a Difference
How Technology Can Help You
The NADSP Code of Ethics: Live and In
High-Definition Full Color!
Make plans now to accompany your DSPs on
Hill visits June 8 to seek support for declaring the week of September 11, 2011 National
Direct Support Professional Recognition Week
and to ensure your representatives understand
the problems associated with funding that relies
on Medicaid state block grants.
Information—including conference sessions
and registration—is available here.
Questions? Contact Mary Pauline Jones at 703535-7850, ext. 108. пѓ‚
May 2011
2011 Rally for Community Living
Wednesday, June 8
9:45 AM
Upper Senate Park on Capitol Hill
______________________________________________________________________________
Last year President Barack Obama
launched "The Year of Community
Living" to recognize and assist
Americans with disabilities. Just
because that year is over, does not
mean our work is done.
Join ANCOR and our partners in the
National Advocacy Campaign June 8
at the Rally for Community Living to
ensure Congress recognizes the
importance of community living for
individuals with disabilities.
Hear from Members of Congress,
self-advocates, family members, and
providers.
Sign up online TODAY!
www.ancor.org/2011RallyforCommunityLiving
May 2011
13
Federal Wage And
Hour Guidance
Child Labor Rules Specifically Restrict Some Work Activities of 14 and 15 Year Olds
By Joni Fritz,
Labor Standards Specialist
I
n a previous issue of LINKS, we discussed
new nonagricultural child labor restrictions
that may affect job duties of 14–17-year-old
employees. In this—the third in a series of
articles on child labor rules, we will discuss
some of the rules that apply to just 14 and 15
year olds.
Hours of Work for 14 and 15 Year Olds
Federal child labor provisions require that
when youth aged 14 and 15 work in nonagricultural jobs, they must be employed
•
•
•
•
•
Cooking over an open flame, which
means that roasting hotdogs or marshmallows over an open picnic fire or charcoal
grill is illegal;
Performing any baking activities (including simply taking a pie out of an oven)
or operating broilers, pressurized fryers,
high-speed ovens, rapid toasters, or rotisseries;
Cleaning cooking equipment when the
temperature of surfaces, oil or grease
exceeds 100 degrees Fahrenheit;
Working in freezers or meat coolers;
Tending or operating most power-driven
machinery, including power lawn mowers
and electric clippers;
Operating a power-driven snow blower on
the job;
Catching and cooping poultry; and
Working as a dispatcher on elevated
water slides or as a lifeguard at a natural
environment swimming facility such as a
lake, river, ocean beach, quarry or pier.
•
Outside school hours;
•
Not more than 18 hours per week when
•
school is in session;
• Not more than 40 hours during non-school
weeks;
• Not more than three hours in one day, including Fridays, when
Remember that all of the
school is in session;
Labor officials say: “If employment tasks that are
• Not more than eight
for 16 and 17
hours in any one day
a task is not specifically prohibited
year olds are also forbidden
when school is not in
session; and
permitted for 14 and 15 job activities for younger
teens. Labor officials say:
• Between 7 a.m. and
year olds, it is
“If a task is not specifically
7 p.m. except during
permitted for 14 and 15
the summer (June 1
prohibited!”
year olds, it is prohibited!”
through Labor Day)
when the evening
Tasks That 14 and 15 Year Olds May
hours are extended to 9 p.m.
Perform
Examples of Duties That Violate Child
Fourteen and 15-year-olds
Labor Rules
•
•
Duties that are specifically prohibited for
14- and 15-year-old employees are summarized from the Department of Labor’s Wage
and Hour Division “Fact Sheet #52—The
Employment of Youth in the Health Care
Industry” and a side-by-side released by the
Labor Department after final rules were published, supplemented by verbal discussions
with DOL officials.
Fourteen and 15 year olds are prohibited from
•
•
14
•
Working after 7 p.m. from Labor Day
through May 31, even if working with a
parent or guardian;
Beginning work at 6 a.m. or working after
9 p.m. during the summer;
Peddling and door-to-door sales;
LINKS
•
•
•
•
•
•
•
Would be exempt from the hours’ standards if employed in a business solely
owned by his or her parents;
May work as “sign wavers,” but only
directly in front of the employer’s establishment;
May cook with gas or electric grills,
where cooking does not involve an open
flame;
May cook with deep fat fryers that use automatic devices to lower and raise baskets
into and out of the oil or grease;
May, on an occasional basis, momentarily
enter a freezer (but not a meat cooler) to
retrieve items;
May use old-fashioned push mowers and
hand-operated clippers;
May load and unload hand tools and
Joni Fritz
•
personal items that he or she will use
at the job site onto and from motor
vehicles; and
May be employed inside and outside
places of business that use power-driven
machinery to process wood products,
under specific conditions.
New “permitted” occupations allow
•
•
•
Work of an intellectual or artistically
creative nature;
Fifteen year olds to work as lifeguards and
swimming instructors at swimming pools
and water amusement parks, if properly
trained and certified; and
Creation of work-study programs for
academically oriented youth, which would
allow them to work during school hours,
with sufficient safeguards to ensure that
their employment does not interfere with
their health, well-being or education.
Where to Obtain Additional Information
For additional information you may call the
Wage-Hour toll-free information and helpline
available from 8:00 a.m. to 5 p.m. in your local
time zone: 1-866-4USWAGE (1-866-4879243).пѓ‚
Author Link: Joni Fritz is a Labor Standards
Specialist whose guidance is free to ANCOR
members and to those who attend a Wage and
Hour Workshop or participate in a teleconference
that she has conducted. Any ANCOR member
who wishes to make arrangements for consultation or workshops with Joni must first contact
Jessica Sadowsky, ANCOR Director, Government
Relations, for a referral at (703)535-785, ext.
104, or at jsadowsky@ancor.org.
May 2011
I
CareTracker
“I love CareTracker because the medication
administration tools alert employees to
distribute, track, and make notes about
medications that are disbursed to the
individuals in our care. Plus, I can manage
and review everything right from my desk.”
To learn more about what CareTracker can do
for you, or to request a demonstration, visit
www.discovercaretracker.com or call 800.338.3681
May 2011
15
Know Your Numbers: How to Implement Performance Excellence
By Antonia O’Brien
Self Advocate Empowerment
W
hen determining the status of your own
personal health and wellness, the first
step is to identify and “know your numbers.”
Weight, body mass index, cholesterol are
just of few of the markers that your health
professional will establish before creating
opportunities and programs that will lead you
to a healthier life. Determining the health and
wellness of your organization will follow the
same guidelines.
Knowing how you are performing in the areas
of customer services, program implementation
and safety are just a few of the key markers that will form a baseline of your current
organizational health. Once you “know your
numbers,” you are on your way to celebrating
success and identifying areas for improvement.
Armed with this valuable information we are
able to empower our self-advocates, enhance
our organizational strategic planning, create
meaningful systems change, and offer transparent communication to our employees and
customers. This is how we use the ANCOR
Performance Excellence Initiative at Dakota
Communities:
Through performance excellence, selfadvocates at Dakota Communities have a
voice. With questions focusing on choice and
independence, our self-advocates are telling us
how we are supporting them in areas that go
beyond basic needs. Having friends, choices
in recreation and determining their course of
health options; they have helped us to see that
quality of life is their highest priority.
Through performance excellence and active
participation, they are determining the focus of
their lives. They are participants in their lives,
not spectators. Their voices are heard in the
Self Advocate Satisfaction Survey; we listen
and respond.
Organizational Strategic Planning
Hearing from our customers, self-advocates,
parents/guardians, case managers and employees has become a primary focus in our
organizational strategic planning process. The
opportunity to identify our strengths and areas
of improvement across all dimensions has
given us the “pulse” of the organization. And in
“knowing our numbers,” we are able to create
strategic goals that are objective and meaningful to those individuals whose satisfaction is at
the heart of our mission and values.
This is the very information that our senior
leadership team and Board of Directors use
each year to determine our goals and objectives
for the course of the organization. In addition,
the opportunity to benchmark against similar
agencies both on a state and national level has
assisted us in comparing services, identifying
system trends and working to create positive
changes that would not only affect our own
agency but the field of developmental disabilities nationwide.
Transparent Communication
Once we are able to identify our strengths
and opportunities for improvement, the use of
performance excellence in our communication
has been essential. Focusing on “transparent
communication” to all of our customers and
relating that back to our use of their feedback in
creating our strategic goals creates a seamless
communication stream.
The opportunity to relate these goals directly back to their comments and concerns
Burial Insurance for those with
Intellectual and Developmental Disabilities
Do any of these situations apply to you?
• Have you had an individual you support pass away with little or
no funds for their burial expenses?
• Would you like a systematic way to track the burial
arrangements of the individuals you support?
• Do the individuals you support face “spend down” situations?
• Do the people you support need the ability to make payments
for their burial expenses, based on their monthly budget?
If you have answered “YES” to any of these questions, let our
team introduce you to Special Life; a life insurance program to
fund the burial expenses for the individuals you support.
Contact:
Ruth M Wolf, Senior Account Executive
The Glatfelter Agency
221 W. Philadelphia St. Suite 400 • York, PA 17405
1-800-632-1884 • www.glatfelteragency.com
rwolf@glatfelteragency.com
16
Coverage underwritten by Whole Life Insurance from Forethought Life Insurance
Company, Batesville, IN. A representative of The Glatfelter Agency, who is a licensed
agent of Forethought Life, is available to answer any questions you may have.
LINKS
May 2011
strengthens the efficacy of our plan and creates
confidence that not only have their voices been
heard, but we are using their feedback to steer
the organization and the services we provide to
our employees and self advocates.
The Benefits are Endless
The benefits of performance excellence are
invaluable. The coordination and distribution
of the surveys, reporting of final results and full
time technical support has allowed us the flexibility to focus our energies on communication
and improvement strategies. In an era of decreased funding and a “tighten your belt” reality,
the time savings and high quality results reporting has allowed all of us at Dakota Communities
to move forward in a confident manner.
When you “know our numbers” and have
an awareness of the current health of your
organization, you can make positive changes
that will assist you in providing opportunities
that are meaningful and motivated. Knowing,
understanding, communicating and responding—that is the formula we are using at Dakota
Communities. And through ANCOR Performance Excellence, we are creating a healthier
organizational culture. пѓ‚
Antonia O’Brien is director of Community Life
at Dakota Communities. Dakota Communities
is a participant in the Performance Excellence
Initiative. Antonia may be reached at tobrien@
dakcom.org or 651-688-8808.
How to Provide Health Insurance to Employees:
NADSP Offers New Limited Health Insurance through ISA
By Joseph M. Macbeth
The program offers:
T
he National Alliance for Direct Support
Professionals (NADSP) knows that health
insurance coverage is a major concern for
many Direct Support Professionals (DSPs) and
for their employers. To assist DSPs and employers in accessing health insurance, NADSP
has developed a preferred provider relationship with Irwin Siegel Agency, Inc. (ISA) to
offer a unique opportunity to NADSP member
organizations seeking a Limited Benefit Health
Insurance Program for their employees.
The plan is available to providers with a minimum of six employees and is also offered at
Target, Choice Hotels and International Paper.
Through NADSP’s partnership, ISA will work
directly with NADSP Supporting Organization members to provide timely responses and
personalized service.
This Limited Benefit Health Plan (LBHP)
offers solutions that are designed to provide
employees with access to quality healthcare—
in the areas they need it most. With LBHP,
provider agencies can offer broad, affordable
accident and sickness coverage for employees
who are not covered by traditional benefit programs and employees who want to supplement
other insurance coverage.
•
•
•
•
•
•
Access to quality healthcare for employees’ most common medical needs, such
as doctor’s office visits, emergency room
visits, hospital room and board, and prescription drugs;
An affordable alternative for employees
who cannot pay or are not eligible for
their company’s major medical offerings;
Expanded eligibility coverage options, including coverage for eligible dependents,
1099 contractors, and valid associations;
No pre-existing condition limitations or
deductible requirements;
Access to thousands of facilities and physicians located across the country through
the Beech Street provider network; and
A personal identification card to every insured, for customer care whenever needed.
To learn more about this exciting new program,
please visit www.nadsp.org/insurance/index.asp.
Remember, you must be a NADSP Supporting
Organization to participate! пѓ‚
Joseph M. Macbeth is executive director of
NADSP and assistant executive director of the
New York State Association of Community and
Residential Agencies. Joe may be reached at
jmacbeth@nysacra.org.
News and Notes
Updates from Around the ANCOR Community
ANCOR Members Receives Local Honor
Mayor Ted Andrzejewski presents New Avenues Executive Director Tom Lewins with a
key to the City of Eastlake in Ohio.
AHCA Announces Upcoming
Events
The American Health Care
Association will be holding the
following events:
DD Congressional Fly-In
May 25, 2011
8 a.m.-11 a.m.
AHCA offices in D.C.
Click here for details.
“DD Day” at the Annual Meeting
September 18
8 a.m.-4:30 p.m.
Mandalay Bay Hotel in Las
Vegas
Session info is available here.
Presents
POSITIVE OUTCOMES:
A Provider’s Guide to Active Outcomes
in association with
Catherine V. Hayes, MA
Consulting & Training
Disability Supports and Services
www.hwisolutions.com
Navigate regulations, guide employees, develop systems that work, and
most importantly, provide positive outcomes for people with disabilities.
To order this publication, contact
ANCOR
1101 King Street, Suite 380
Alexandria, VA 22314-2944
Phone: (703) 535-7850 Fax: (703) 535-7860
www.ancor.org • tyu@ancor.org
15% discount for mulltiple copy sales of 10 or more.
To receive this special discount, please mail or FAX order to ANCOR.
May 2011
17
The Riot! Joins CDS Curriculum
Hear From Self-Advocates
By Tom King
T
he Riot!, a new and exciting addition to the
ever-evolving College of Direct Support’s
(CDS) curriculum, has been rolled out and this
new genre of courses will help Direct Support
Professionals (DSPs) incorporate information
and perspectives from self-advocates into their
daily support work.
The original Riot is a newsletter written by and
for self-advocates with disabilities that began
four years ago. The newsletter includes information on a variety
of topics important to
self-advocates. Staff
at the Human Services
Research Institute help
the writers and editors
with this newsletter.
The staff at the University of Minnesota’s
Institute on Community
Integration (ICI), which
develops and authors
the CDS curriculum,
is taking issues of The
Riot! and basing each
new course developed
in this genre of courses
on the full content of
the newsletter.
The first CDS course to be released is “The
Riot! Silly Rules Issue.”
Here are some of the “silly rules” that this new
course addresses:
•
•
•
•
•
•
•
Personal time and preferences
The service system
Dating and friendships
Work and day programs
Issues at home
The marriage penalty (where you lose disability income if you get married)
Barriers to voting
The Riot! is described as “irreverent and
unconventional” in content and presentation.
These are real voices from real people with
real stories about real-life topics.
disabilities,” said Amy Hewitt, senior research
associate at ICI.
Hewitt said that through The Riot!, DSPs learn
what is important to self-advocates and how to
shape the support they provide in ways that promote respect and understanding of the perspective
of self-advocates. “The Riot! content is edgy and
is likely controversial for some in the service
system. Adding this edge and such a loud voice
from self-advocates we feel is a tremendous asset
to the CDS curriculum,” she explained.
Here is how the
University of Minnesota describes this new
genre of courses:
“The Riot! is not like a
regular CDS course. It
is a new way to learn.
The navigation and
layout are very different
than traditional CDS
courses. There are no
test questions or OJTs.
However, you will be
encouraged to think
about the topic and
reflect on your actions
as a DSP. This can help
you to get a good start
on a portfolio sample.
Some of you may not
be interested in a creating a portfolio. This is
fine. However, you will still be asked to pull
together some evidence of your actions related
to each issue of the CDS Riot. You will be
asked to present this to your supervisor. This
will be a way to show what you have learned
from the course.”
Several courses will be released annually built
around The Riot! newsletters, Hewitt said. The
Riot! newsletter is published four times a year.
Here’s what Apostrophe magazine wrote about
The Riot!:
“The Riot! is all about self-advocacy, or people
speaking up about their lives. A group of
self-advocate editors from around the country
Tom King
writes each issue with founding staff at the
Human Services Research Institute (HSRI).
Together, they take a tough and honest look at
sensitive issues like closing institutions, silly
rules that keep people down, disability pride,
and intimate relationships. They tell it like it
is—Riot style, with a purpose and a sense of
humor. They want readers to think about issues
that people with a wide range of disabilities
experience, especially people with intellectual
and developmental disabilities. They also try to
make you laugh and feel good about life.”
You can check out The Riot! at its new website.
You’ll find a lot more there than just the newsletter. The new Riot! has greater accessibility
features, showcases products, and highlights its
North American art gallery called “Spotlight
Studios.” The gallery celebrates artists with
intellectual and developmental disabilities
from the United States and Canada to display
and sell their work. Often, these artists are not
acknowledged for their ability to create art that
we can all appreciate. They want you to see
their art.пѓ‚
Author Link: Tom King is a communications
consultant for the College of Direct Support.
You can reach him at 865–659–3562 or via
email at tkwrites1021@gmail.com.
To find out about the ANCOR Foundation partnership with the College of Direct Support and
the ANCOR Member Buying Pool, contact Bill
Tapp at 1-877-353-2767 (toll free) or email
him at Bill@collegeofdirectsupport.com.
“The Riot! provides an opportunity for
us to infuse the CDS curriculum with
a learning tool that delivers training to Direct Support Professionals
strictly from the voice of individuals
with intellectual and developmental
18
LINKS
May 2011
May 2011
19
How to Advocate on the State Level
By Fred Romkema
Also, do not underestimate the power of
informal communication that has taken (or
hen asked to describe the best way to
is taking) place in regard to the issue—even
communicate with elected officials on
the state level, I thought, “How simple is that?” communication that may not be totally accurate. In other words, it is wise to know
As an elected official, it should be easy to prowhat the discussion is or has been “on the
vide a clear and succinct response. In doing so,
street” in regard to this issue. In essence, the
it is important to note that the suggested basic
credibility—as well as
principles reflect my experithe public perception
ences, and personal preferences,
If an elected official of the issue and the inas well as my observations.
has a positive rela- dividuals/agency/entity
involved—is of great
In sum, it is vitally important
that elected officials know you,
tionship with you and importance.
like/appreciate you and your
likes/appreciates you, Knowing you is the next
message, and respect you.
it is logical for him to principle. It is more difficult for an elected official
The most important principle
support you and your to not support you if they
is respect. The idea or possible
know you. Of course,
legislation being presented to
program.
this may have a negathe elected official should be
tive effect if they know
very defendable. This includes
you or your program is delivering less than top
the publicity or general conversation surroundquality services and/or if your reputation is not
ing a given issue.
stellar.
It is very difficult to “sell” a program/issue/
Getting to know an elected official is similar
topic that has experienced negative headlines
to forming or nurturing a friendship—make an
in the newspaper. In such cases, the elected
effort to communicate and update on a regular
official will have a difficult time supporting the
basis and schedule face-to-face visits. Get to
issue and the individual.
W
20
LINKS
know the official. This principle is about establishing a professional relationship so that the
elected official believes that he knows you and
that there will not be any surprises that blindside him. In essence, knowing involves trust.
If an elected official has a positive relationship
with you and likes/appreciates you, it is logical for him to support you and your program.
This may be a result of such things as sharing
common interests and communicating easily in
public. The elected official should have a firm
appreciation for the person as an individual
and a sense that this individual is a solid, good
person to represent.
To get them to like both you and your message,
it is best to communicate in short, concise messages. Remember that you are competing with
many just causes, and the elected official—like
you—has just 24 hours in the day!
Your message should be succinct, yet memorable enough to separate itself from the volume
of correspondence they (most likely) receive
every day. Make face-to-face meetings positive, factual and, if appropriate, enjoyable. As
See State Level, page 22
May 2011
May 2011
21
State Association View
When in Crisis—Innovate!
Diane McComb
ANCOR Liaison to State Associations
Our country’s economy finally seems to be
moving in the right direction. Although it seems
like it’s doing so at a snail’s pace, state revenue
reports are starting to inch upwards, unemployment is receding from its former high of over
10%, and a few states are looking at increased
funding for human services in FY 2012.
The last three years have been the worst on
record for the economy and as predicted, the
other side of this recession finds us staring at
a future we can barely recognize. Those who
have waited for things to get back to normal
will have a very long wait—our future “normal” is still being defined.
So where are we?
What’s different from
the pre-recession
landscape for people
with disabilities?
Where will the trends
take us and what opportunities lay in the
future?
Our political climate is about as uncertain as
it’s ever been. We have an unprecedented move
to social extremes, having lost representation
by the moderates of both political parties at
state and national levels. Twenty-nine states
have newly elected governors.
National debt is at its highest level, the housing
market—though showing signs of a very slow
recovery—remains down. Unemployment continues at a stubbornly high level in many states.
Furthermore, state agency leaders in intellectual developmental disabilities and behavioral health are falling victim to the political
upheaval evident in our states. Predictability is
very hard to come by.
In addition to the effects of the recession, there
are other elements driving the turmoil such as
LINKS
Department of Justice inquiries, the very real
threat of managed care taking over long-term
services and supports, and the political hostagetaking of Medicaid by an all too conservative
Congress.
A number of states are
undergoing investigations
by DOJ, and their reactions
and responses vary. Georgia
has placed a moratorium on
all new admissions to state
institutions and has a plan to
close all within a few years.
Virginia created a $30 million
trust fund and will close at
least one state institution
while reducing the census
at others. Maryland closed its largest state
residential center and one smaller one this year.
Texas, on the other hand, pumped millions of
dollars into shoring up its institutional system.
Some among us fret about all
the turmoil, but others are
seizing the moment to
implement innovations that
are redefining the way people
with disabilities are
supported today.
As of April, 45 states
and the District of
Columbia are still projecting budget shortfalls
in 2012. Only Alaska, North Dakota, Wyoming,
Alabama, and Arkansas are predicting balanced
budgets. Further, only North Dakota has an
FY 2012 budget that exceeds its spending for
FY 2008. Every other state’s FY 2012 budget
is below pre-recession levels, and the states of
Oregon, California, Nevada, Texas, Louisiana,
Minnesota, Illinois, New Jersey, and Rhode
Island are projecting budget deficits greater than
20% of their general fund next year. Things
remain dire.
22
Diane McComb
The sluggish economy and unsustainable
funding for disability programs have states
reaching for long-term budget solutions such
as managed care, waivers for maintenance of
effort, and global waivers. Managed care is
moving like a tsunami across the country this
year, and those who think behavioral health and
intellectual disabilities will somehow be carved
out should take notice. Illinois, Maine, Florida,
Virginia, Kansas all are looking at proposals
to put LTSS under a managed care framework.
We need to be figuring out how this type of
system can work in a positive way for people
with disabilities and advocate vociferously for
performance outcomes that are important to
people with disabilities.
Many states are requesting waivers from
Maintenance of Effort in their state Medicaid
programs. We need to be on the lookout for a
reduction in eligibility criteria that leaves some
people with disabilities and behavioral health
needs without medication and primary health
care. We’ve witnessed the loss of state general
funded programs in disabilities across the states
in the past two years, resulting in thousands of
people losing supports in community programs.
The Big “C,” from page 20.
you would expect for yourself, extend courtesy
and respect the privacy of others—which
includes calling at appropriate times of the day
(versus meal times, late nights, early mornings)
and not interrupting individuals when they are
engaged in conversation with others.
Personalized emails (versus form letters) are
acceptable and should be used. As this type
of communicating may or may not be the appropriate way to contact specific officials, it is
best to know your respective elected official’s
preferred method of contact.
Thus, knowing you, appreciating/liking you,
and respecting you are three basic principles
that serve to strengthen your impeccable program, your good stature in the community, and
your general approachability. These—along
with an effective communication approach—
will enable your work with your elected official
to be a meaningful experience. пѓ‚
Fred Romkema is CEO of Northern Hills
Training Center, located in Spearfish, South
Dakota. Fred is a second-term Representative
in the South Dakota State Legislature. He also
currently serves on the ANCOR Foundation
Board of Trustees and is a former two-term
president of ANCOR.
Over the last 40 years, we’ve created a system
that cannot possibly be sustained financially
into the future; yet, some among us continue
to advocate maintaining the status quo. In
a state experiencing a 16% funding cut, the
association exec lamented, “In the past, we
knew how to advocate for what we do; but, this
year, every human service is cut just as deeply.
There’s nowhere to turn to make up the cut. We
are all in this together.” The time to innovate
has never been more promising.
Some among us fret about all the turmoil, but
others are seizing the moment to implement
innovations that are redefining the way people
with disabilities are supported today. There
are real opportunities in the implementation
of provisions in the Affordable Care Act; the
credentialing of DSPs with the DOL DSP
Apprenticeship Program, the College of Direct
Support, the NADSP Credentialing Program;
and technological advances morphing at the
speed of light.
There are real innovation opportunities in this
climate. New Jersey looks poised to submit a
state plan amendment under the new 1915 (k)
provision under the Affordable Care Act. Other
states are moving forward with amendments
under the expansion of the 1915 (i) provision
May 2011
that will allow them to offer personal care
and other supports without the requirement of
people with disabilities meeting an institutional
level of care.
It is clear that this effort is the result of the
leadership of one agency leading the way. A
similar effort is underway in Maryland, led by
the association’s HR Directors’ network.
Credentialing is finally inching forward with
some states promoting the College of Direct
Support system-wide (New Jersey); mentoring
chapters of the National Alliance of Direct Support Professionals; and piloting the DOL DSP
credentialing program (of which ANCOR and
NADSP are co-authors).
While the economy will right itself eventually
and the political climate will swing the other
way at some point, people with disabilities
continue to need some level of support to
achieve meaningful lives in communities of
their choosing.
North Dakota is piloting the Apprenticeship
program through partnerships with its state
Departments of Labor and Commerce. The effort is being spearheaded by Fraser, Ltd.—who
is working with both Minot State and Fargo
Universities—to implement a certificate in
disabilities that leads to a Bachelor of Arts in
Special Education and national apprenticeship
status.
Building on North Dakota’s 41 modules in
developmental disabilities, they have added 15
new courses to accommodate requirements of
the apprenticeship program. There are more
than 90 DSPs at Fraser, Ltd., and they are hoping all will become engaged in the apprenticeship efforts over the next two years.
Some speak of lowering expectations going
forward; yet, we could instead choose to focus
on changing expectations. We could instead
create a culture of independence rather than dependency. The way in which we provide those
services and supports is at the very crux of the
political debate today as Congress weighs options about what to do with Medicaid.
We must strengthen our coalitions. We must
listen with renewed effort to people with disabilities and their families. We must seize the
opportunity to innovate—to do things differently—offering better quality, lower cost, and
better access. We must. пѓ‚
Author Link: Diane McComb is ANCOR’s liaison to the State Association Executives Forum.
She can be reached at dmccomb@ancor.org.
ANCOR Partners
want YOU to click!
A quick and easy way to contact
ANCOR’s partners and advertisers
when you see their ads in LINKS (and
on the ACC) is to click on the website
addresses, and you’ll be taken directly
to their websites. The partners and advertisers recognize the value in hyperlinking (hot linking). Most times, just
by clicking on the logos in the ads you
will be taken to the websites as well.
Many email addresses work the same
way— click on the address and you’ll
have an email ready for you to utilize
for your message and then send. Generally speaking, sponsors whose ads
appear on the ACC can be accessed by
clicking anywhere on their ads.
So, don’t hesitate! Just start clicking
when you see something of interest
and you want more information!
Attention ANCOR Members!
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May 2011
23
P-CARD USERS POCKET HUGE “WINDFALL REBATES”
Believe it … ANCOR’s P-CARD users are pocketing “free money”
… and you can too!
With new and improved incentives, your agency could share in
rebate opportunities established by the collective purchasing
power of all ANCOR members participating in ANCOR's
P-Card Program.
Simply charge everything from paper
clips and medical supplies to gas
and capital items like computers
or appliances!
Once your annual P-CARD
purchases reach $250,000, your
agency will be eligible for a rebate made
possible by the collective spending of ANCOR
members participating in the program! This allows your
agency to reach rebate levels unobtainable on your own!
Take it from those who know -“We now have access to real time purchasing information.
We incur no fees. Instead, we receive an annual rebate of
$10,000 for using the P-CARD.”
–Chuck Sweeder, Keystone Human Services
US Bank is a proud member of ANCOR’s Shared Resources
Purchasing Network. Please click here for more information.
Contact Lori Allen, U.S. Bank’s AVP-Sales.
Be sure to identify yourself as an ANCOR member
when calling or e-mailing for more information:
Phone: (859) 384-4487
Email: lori.allen2@usbank.com
.
Inquiries can also be directed to Marsha Patrick, ANCOR’s Director
of Resource and Revenue Development at mpatrick@ancor.org.
24
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May 2011

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