Dear Arc Executives

As a healthcare professional my first inclination is to help people. I believe that is why I questioned one
of the “Action Alerts” from The Arc a couple of years ago. I discovered that contrary to what I had been
led to believe, The Arc chapters do not advocate for ALL people with developmental disabilities but
really only the higher functioning or maybe the medically fragile client. There are many in our
population for who The Arc Chapters actually advocate for harm to come to them. It is for this particular
group that I am speaking out for.

The Arc has been able to accomplish much and I appreciate those efforts. I do hope though that The Arc
can focus on the areas that you do well in – advocating for our citizens who can live safely in the
community. Contrary to what you say publicly, there is a segment of our population of those with
developmental disabilities who are best served in our state operated residential centers and if you
cannot advocate for them we’d all appreciate it if you could at least leave the situation alone. The Arc is
not aware of the issues that these residents face nor is The Arc an advocating for these residents. You
do much more harm than good in attempting to advocate for these residents.

According to The Arc of King County’s webpage your organization shares “ information and resources
with individuals with developmental disabilities, their family members or caregivers, friends, community
partners and professionals” I have not found this to be true with regards to any information that I
would like to share. I have been censored, shunned, and ignored by your organization due to the
questions that I have asked and information that I have wanted to share. Even though on one of the
Facebook pages of one of your chapters, you call for an “open discussion” there is no ability to
comment. My postings on blogs and Facebook have been removed because they question some of the
issues at hand. My information is very valuable for those who have very high acuities and intensive
service needs. Why would you deny one the right to read and choose?

Due to the monopoly that your organization holds it is difficult to share information with other families
who may need information that you do not provide. By censoring this and removing any reference to
alternatives, you are doing these citizens and families a great disservice. You are taking away their
choice to be informed.

From the research that I have done, I have discovered a multitude of flawed analyses, reports and
information that DDD has published. I have attempted to share that information yet I have been
accused of being “abusive to our elected officials” by questioning some of these reports. How can
questioning the analysis of data in a published report be abusive?

Sylvia Fuerstenberg has been the most disrespectful in her letters to me and also in threatening to
pursue legal action against me for using the logo to identify The Arc. I believe that is what a logo is for -
identification. Sylvia has written comments about me that have been untrue and has accused me of
actions that I have not done.

Joy Caldwell has asked “if RHCs are so great, why don’t we see people in Olympia testifying how much
they LOVE living there?” This comment alone tells me that The Arc advocates do not understand the
issues of the RHC residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip
to Olympia, may not be able to speak coherently or get a thought across to others, may not tolerate
being quiet and still in a room of legislators, may not tolerate crowds, may not be able to maintain
appropriate behavior skills for very long or may be too medically fragile to travel. That’s why you
haven’t seen them.

You also haven’t seen the multitude of parents and guardians for our residents. Unlike The Arc
employees and lobbyists, we are not paid to go to Olympia. We do not have preferential treatment for
MCP or respite so that someone can watch our children while we are in Olympia. We have to work or
be home to care for our loved ones. We do not receive state money to make sure that people are
informed on care decisions for our family members with disabilities. Are you aware of the thousands
and thousands of state dollars that The Arc receives in order to share information? Why then, is
valuable information censored?

Many of the self-advocates that The Arc parades in front of the legislators are clearly given speeches to
read. Many have left the institutions many, many years ago and clearly it was not the place for them
anyhow. It’s wonderful for these people that they are able to live in the community but is it right for
them to yell “Close the Institutions” so that others may not have a chance at a safe and healthy life?

I have invited some of you to take a tour of Fircrest with me and meet my son and see how well he is
doing. People declined. In fact, Sylvia told me that she had seen the institutions years ago and didn’t
need to see anymore. She then went on to describe Fircrest yet by her description, it was clearly
evident that she had not been there in years.

Are you aware of the very low minimum requirements for staff at a group home? Would you think that
this would be safe to manage residents who need intensive behavior support? Are you aware that in
order to be self-directed, one needs to be able to direct and supervise the help? Are you aware that
nurse delegation is illegal in many of the circumstances that are going on in the group homes?
This is just the tip of the iceberg of the problems and misinformation that you and your members
communicate to our legislators and public as fact. I really do think that it’s time to look at the Core
Values of your organization. They values sound great but they are not being adhered to.

Again, I do appreciate all the work you do do for our citizens. What you need to realize though that your
actions in regards to advocating for closing our state operated residential centers is a move that will not
only devastate the homes and lives of many but will also decrease the services to those already in the
community. If you were able to look at the data and analyze it, this would be very clear. I’m sorry that
you have not been able to do that.

Thank you,

Cheryl Felak, RN, BSN

Disability Advocate, Researcher - Parent

According to the mission of The Arc

The Arc represents the public interest, supporting and acting with and on behalf of all people with
intellectual and developmental disabilities and their families regardless of the type of disability or
membership in The Arc.

Who We AreHistory

Our NameSix Decades of AdvocacyResearch & PreventionMission & ValuesPosition Statements

Quality of LifeRightsLife in the CommunitySystemsAll Position StatementsBoard of Directors & Staff

Board of DirectorsThe Arc StaffFinancial InformationMedia Center

Fact SheetFAQ'sVideosPeople First Language GuidePeter V. Berns BioPress RoomThe Arc in the
NewsPublication ArchivesContact Us.Mission Statement

The Arc promotes and protects the human rights of people with intellectual and developmental
disabilities and actively supports their full inclusion and participation in the community throughout their
lifetimes.

Core Values

People First

The Arc believes that all people with intellectual and developmental disabilities are defined by their own
strengths, abilities and inherent value, not by their disability.

Equity

The Arc believes that people with intellectual and developmental disabilities are entitled to the respect,
dignity, equality, safety, and security accorded to other members of society, and are equal before the
law.

Community

The Arc believes that people with intellectual and developmental disabilities belong in the community
and have fundamental moral, civil and constitutional rights to be fully included and actively participate
in all aspects of society.

Self-determination

The Arc believes in self-determination and self-advocacy. People with intellectual and developmental
disabilities, with appropriate resources and supports, can make decisions about their own lives and must
be heard on issues that affect their well-being.

Diversity

The Arc believes that society in general and The Arc in particular benefit from the contributions of
people with diverse personal characteristics (including but not limited to race, ethnicity, religion, age,
geographic location, sexual orientation, gender and type of disability)
Guiding Priciples

Participatory Democracy

The Arc acts to ensure that people with intellectual and developmental disabilities, their parents,
siblings, family members and other concerned members of the public have meaningful opportunities to
inform and guide the direction of the organization’s advocacy, including determining policy and
positions on important issues. The Arc strives for diversity in its leadership, as well as in all facets of the
work of the organization.

Visionary Leadership

The Arc leads by articulating a positive vision for the future of people with intellectual and
developmental disabilities and catalyzes public and private support in realization of that vision through
carefully planned and well-executed goals, strategies and actions.

Public Interest

The Arc represents the public interest, supporting and acting with and on behalf of all people with
intellectual and developmental disabilities and their families regardless of the type of disability or
membership in The Arc.

Collaboration

The Arc works with individuals, organizations and coalitions in a collaborative fashion. The Arc values
and promotes effective partnerships between volunteer and staff leadership at all levels of the
organization.

Transparency, Integrity and Excellence

The Arc conducts its business with integrity, accountability, and open, honest and timely
communication. The Arc is committed to quality and excellence in all its does

Paid lobbyist versus those that take off work to go to Olympia

Preferential treatment – respite/MCP

Learned to document – Sylvia and dianna say I’m abusive – because I haven’t agreed - only abuse was in
Sylvia’s writings to me – legal action,

Mission – to share information with other – then why the censorship?

Minimum requirements for group homes? 18 year olds only

State law of what self-determination means?

Old fashioned picures of institutions, having advocates who have not lived there for 30 years

State money going to the arc

Studies that they keep having that are wrong

Sylvia calling me abusive

Their self advocates who are told what to say

Joy saying why don’t we see people from the intsit saying they love them

Not doing harm to others,

There are many more problems that are arising and it’s time that some of these issues got resolved. I
am becoming more and more frustrated with the censorship and misinformation that is being spread by
Core Values

People First

The Arc believes that all people with intellectual and developmental disabilities are defined by their own
strengths, abilities and inherent value, not by their disability.

Equity

The Arc believes that people with intellectual and developmental disabilities are entitled to the respect,
dignity, equality, safety, and security accorded to other members of society, and are equal before the
law.

Community
The Arc believes that people with intellectual and developmental disabilities belong in the community
and have fundamental moral, civil and constitutional rights to be fully included and actively participate
in all aspects of society.

Self-determination

The Arc believes in self-determination and self-advocacy. People with intellectual and developmental
disabilities, with appropriate resources and supports, can make decisions about their own lives and must
be heard on issues that affect their well-being.

Diversity

The Arc believes that society in general and The Arc in particular benefit from the contributions of
people with diverse personal characteristics (including but not limited to race, ethnicity, religion, age,
geographic location, sexual orientation, gender and type of disability)

Guiding Priciples

Participatory Democracy

The Arc acts to ensure that people with intellectual and developmental disabilities, their parents,
siblings, family members and other concerned members of the public have meaningful opportunities to
inform and guide the direction of the organization’s advocacy, including determining policy and
positions on important issues. The Arc strives for diversity in its leadership, as well as in all facets of the
work of the organization.

Visionary Leadership

The Arc leads by articulating a positive vision for the future of people with intellectual and
developmental disabilities and catalyzes public and private support in realization of that vision through
carefully planned and well-executed goals, strategies and actions.

Public Interest
The Arc represents the public interest, supporting and acting with and on behalf of all people with
intellectual and developmental disabilities and their families regardless of the type of disability or
membership in The Arc.

Collaboration

The Arc works with individuals, organizations and coalitions in a collaborative fashion. The Arc values
and promotes effective partnerships between volunteer and staff leadership at all levels of the
organization.

Transparency, Integrity and Excellence

The Arc conducts its business with integrity, accountability, and open, honest and timely
communication. The Arc is committed to quality and excellence in all its doesyour organization.

(The Arc of King County)