Page 1

Colorado Interim Committee on

Long-Term
Care Health Care and Support to
Persons with Disabilities

Parents’ Views on the

ProblemPotential
& Solutions

July 3, 2007

IMPORTANT NOTICE
No taxpayer, grant, or donated funds were used in the preparation and production of
this report.
here Everything
was researched, written and produced by concerned parent volunteers.
 Page 2

Introduction

A group of parents of adults, teens, and some children with disabilities

urgently needs to inform
Interim Committee the
on Long-Term Care Health Care and Support to Persons
with Disabilities
referred (further
to as “Interim Committee”) about our insights, ideas, concerns and
plans. These
active, informed,
involved parents represent all backgrounds and have children with all
types of disabilities.
We have united together, even with differing viewpoints, to tell you our stories,
our understanding
issues at hand, andoftothe
present you with important ideas and concerns.

All parents in this group agree that while we want to provide you with this
information
the committee as work,
background
we aretounsure about how to move forward with our ideas
because
resourcesweor do not have the
information at-hand to provide the committee with the proposal
formatswith
along youthe
have outlined, analysis you require for consideration. Therefore,
cost-benefit
our hope is will
Committee that consider
the Interim
these ideas and incorporate them into other proposals
provided
have by those who
the knowledge and access to information that we do not have. We ask
that you
these connect us
individuals or with
organizations, as you see fit.

Furthermore, parents in this group are unpaid individual advocates for our
children. We While
complaining. are notwesimply
need to have our voices heard, we are doing all of this
at ourfrom
time ownour
expense, taking
jobs, businesses and care-provision duties etc., to advocate for
our children.
consider Please
this as you read on.

Our Stories
Attached you will find some representative biographies of some of our children
and system
the our experience with We hope that you will read these before continuing
in Colorado.
with
#1) this paper. (Attachment

Life as a Parent of a Child with a Disability

The parents represented by this paper have learned, throughout the lives of
their way
only adulttochildren,
get the that the we need for our children is to either create our
programs
own programs
and/or and heavily
to advocate systemsfor them.

Parents of typical children have access to after-school programs, full inclusion

in extra-curricular
activities, sports at school and in the community, circles of friends for their
children who
activities theyhave many access to higher education and jobs. Parents of
do together,
typical
to save children arefor
for college often able
their children and for their own retirement. They can
reasonably
children expectout
to move their
at 18-21 years old.

Parents of children with disabilities rarely have any of the above. All of the
money
(and we have)
don’t have as parents
goes to medical bills, paying others to help us with our
children,
work and for
to care staying
themhome from
because we have no help. On top of this, we have to
advocate
the schoolfor our children
system, in with our friends and family. It is a highly
and even
stressful,
one child.24 hour asavings
College day jobfor
– for
our other children don’t exist, either.

Parents have to learn everything about their child’s disability, everything about
the school
laws relatedsystem and education
to special the services , everything about service
disability rights. systems, and a great deal
about

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 1
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 3

School systems have limited funding from the feds and the state to address the
special education
children like ours needs of many times special education supports are
– therefore
th
extremelyand
duration limited in scope,
frequency. Before Ref C, Colorado was 50 in the
nation
districts to provide special education services. Children with high needs in as
such
some of the herein
represented childrenare frequently pushed off to the side. the amount
of support
given to
Some parents are told to “institutionalize” our children – when, in fact, there
are noif longer
even institutions,
we wanted to do that.

Our children with disabilities are frequently the victims of violence, abuse, and
exploitation.
marriages Our and the divorce rate among parents of children with
suffer,
disabilities
80%. As with is thought to be the
all divorces, around
mother frequently becomes the sole provider
without child support.
Parents are working with many different systems, many of which we don’t
understand. We spend
deal of our time trying atogreat
find out where we are supposed to apply for
services,
SSI how to navigate
and Medicaid, and onsystems,
the fact that systems don’t work together – all the
while trying
children and to care
hold for There
jobs. our is no place a parent can go, to get complete, one-
stop
to information
utilize the systemon how
to meet the need of our sons or daughters.

Many of the parents in this group have formed organizations to support our
children,active
become or have had to in other organizations serving our children’s specific
volunteers
disability. Some
organizations of brought
have these substantial changes to the "system."

th
Recently, United Cerebral Palsy, in a report on inclusion, favorably
commented
best that Colorado
in the country was 8services outside of institutions. These "non-
in providing
institutional"
direct result ofservices
parent are a
advocacy over many years.

We don’t tell you these things because we are complaining. We want you to
understand
become angry,howtired,
parents
frustrated, and resentful of the systems that are in place
to helpcause
often us –us
systems that
much distress – the same systems that our own tax dollars help
to provide.
When parents complain about the system, we are told such things as “getting
services isfrom
System the the
sameDD as being on welfare – and people on welfare don’t get to
complain.”
from a parent(A who
true story
was told this by her CCB case manager).

Facts
Although we are parents, we are informed parents. We know what the facts
are related
problem andtothe
the delivery
Wait List
of DD services in Colorado. We know, for example
that:
According to the Alliance Report to the Joint Budget Committee in
December, 2006,
individuals on thethere
wait are
list 3,746
. However, we also know that there are
younger children waiting for Familyscores of other families with
Support.
TABOR is a significant, if not impossible, barrier to obtaining new
funding.
Funding options are limited and the current State budget cannot support
increased
system in funding
spite of to
thethe DD passage of referendum C.
recent
The number of resources available to serve our children in FSSP, SLS,
 and Comp appropriation.”
“available are limited to the
CCB’s are providing both eligibility/case management and direct services.
This is aInclear
interest. conflict
states of judged to have the best DD systems, direct
generally
services
from are usually
functions insulated
like case management and quality measurement.
Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 2
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 4

There is vast disagreement between many groups about whether or not

there should
Wait list. be asee
Some state-wide
different wait-lists as advantageous to some areas,
when to
State in implement
fact, the failure
a fair,ofobjective
the system to judge the level of services a
specific person
requires, withsource
is the real DD of different wait-list times in different regions.
This problems
community pits community, parent against parent.
against
Mill Levies have been passed in several counties that were supposed to
address some
However, our of the wait
CCB’s list.that State Budget cuts eliminated any gains
tell us
that
mill were
levies.made
The from
CCBsthose used local mill levies to “backfill” loss of support
from the
There is aState.
severe lack of qualified service providers, housing options,
jobs, daycare,
services and other
to support the population. The primary factors in this are very
low these
that pay scales, andthe
jobs are thelowest-ranking
notion in the for-profit employment
th
system.
Colorado ranks 48 in per capita spending on services for people with
- Coleman Institute, State disabilities. (Attachment
of the States DD 2005), #2 as of 2004. (Note: the
State combined
been of the States listranking
with has of tax burdens by State for easy reference).
rd
There has
decline been a precipitous
in Colorado’s ranking in this area since 1977, when Colorado was . It is
th th
23
Colorado will be ranked 49 or 50 when the 2006 report is issued. likely
Rapid growth in certain areas of the State has been part of the cause of that
the Wait List.
Outline of “the Problems”

People waiting, but not just waiting – People on the Wait List are both
adults
and whose
may haveparents
no place have aged
to go and young adults who need something productive
to do with
during the their time
day. Nothing happens while they are waiting except that their
parents
careers, have to rearrange
finances, their
resources, living situations, etc., to accommodate an adult
who or
care either
whoneeds
is an 24 hour
adult who need supervision and support to connect with
friends and recreate
community. in the are not building upon their K-12 education and can
Young adults
actually lose
inactivity. skills can’t
Parents due tohold full time jobs and take their adult children to
engage in developmentally
appropriate adult activities every day. What’s more is that many parents are
unaware when
services of thetheir
drop-off
childinreaches adulthood, and therefore not prepared for it.

How the CCB’s work with us while we wait – While this varies from one
CCB to little
receive another, families
in the way of “case management” while they are waiting. Case
managers are not
inform parents of prepared
potential to
programs outside of the CCB system. There may
be extremely
amongst case high turnover
managers – one parent reports five different CCB case managers
during theone
instance, pastofyear. For in this group was not informed of the availability
the parents
of the HomebyCare
Allowance, their CCB. Parents can look for services, and can find them, but
cannot have
services those
unless they pay out of pocket. Some programs charge $50 an hour,
just to take to
disabilities adults withor to do volunteer work! Some families actually lose
outings
their Family
manager Support
(which variescase
among CCB’s) if they are using another waiver (and
thereforealtogether)
Support lose Family and are on the wait list for SLS or Comp Services.

Service providers won’t work with “tough cases” -- People who have
actually
wait list reached
can’t getthe top ofproviders
service the to work for the allotted amount of funds.
The CCB’s for
responsible say ensuring
they are there
not are service providers – their responsibility ends
at makingParents
eligible. the adult
are child
unable to find quality care for $8 per hour. Parents of the
more severely disabled
more find
often severely
that disabled
day programs will not accommodate their children because the
for-profit
to making world is oriented
a profit, therefore they have a tendency to cherry-pick the people
that they
least can of
amount serve
costforto the
maximize profit. Some other programs are oriented
toward
approach.a “one sizeoffits
Parents all” with behavioral issues are also left out, because
children
providers
for are not prepared
them either.
Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 3
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 5

Program delivery limited – There is a trend to not offer services on Fridays.

Therefore, evenMonday
needs to work if a parent
through Friday, they have no options for a program
and would
Friday off. have to have every

There are no higher education options for people with developmental

disabilities
are community – Although
collegesthere
that do have students with disabilities, there are no
degree programs
certification or in higher ed that can support people with developmental
programs
disabilities.
Remembering that most parents have no “college fund,” students with
disabilities
because youcannot getinfinancial
must be a degreeaid
program to get it.

Many people with disabilities could be working, lessening the need for
immediate
there are noservices
programs– outside
but the CCB system to support a person with a
adisability
job otherinthangetting
Vocand keeping
Rehab. Voc Rehab is limited and can close cases when
an individual
work with. Voc is too
Rehabhardis tounable to provide on-going employment support to
maintainsupports
without employment,
from theand DD system, many are unable to maintain
employment.
Waste in the system & how that appears to constituents – Parents continue
to wait for
nowhere to services,
turn when have
their adult children sometimes become violent or when
their
beyondphysical needs are
the parents’ capacity to care for them. Adult children (and often
parents)
level. In are
the living belowparents
mean time, povertysee that in FY 2004/2005 half of CCB
directors are
$100,000 perearning overtwo of them are earning over $200,000 & $300,000.
year, with
Some CCB
received 10% Directors
- 18% salary increases from FY 04/05 to 05/06 ($10-20,000).
People with
receive disabilities
SSI received whoper month increase this year, by comparison.
a $20
(Attachments #3, #4)
Additionally, highly paid assistant administrators and Financial Officers
consumemore,
What’s precious
CCB’sresources.
have formed other organizations to lobby legislators and
between the CCB’s (CCB
trade organizations and the Partners and the Alliance) have spent $80,000 on
lobbying. These
organizations hadCCB tradeof over $750,000, with most of those critically
budgets
needed
the CCBs.dollars also provided by

We also see the brand new buildings and purchases of extravagant offices by
some CCB’s.
parents Whilewholeheartedly
understand we that the salaries would not serve hundreds
of people – that,
understand we want you to and taxpayers who are living in such terrible
as consumers
conditions,
why so much wemoney
have toiswonder
spent on salaries, overhead and lobbying for so many
CCB’s. We,have
taxpayers, andthe
all right to ask this question. We also know that if a statewide
referendum were to
happen, someone would be looking deeply into the waste in the system and ask
the question,
Executive “The get HOW much?” Yes, we know it is not the single most
Directors
important issue,
extremely but itWe
symbolic. is simply must ask the question: is there a better way to
deliverefficiently?
more these services
In 44 years, has anyone ever looked into this?

Furthermore, we view the value of even 1 or 2 lives of these children and their
families
the as priceless.
salaries If
of CCB directors were more appropriate, could even 1 or 2
children
save in need
a family be hopelessness
from served and – isn’t it worthwhile?
We know that CCB’s are nonprofit organizations and their Boards of Directors
determine the salaries
their directors of not state offices, under state guidelines for
– they are
compensation.
these monies are CCB’s also state
not coming fromthatthe Medicaid Waivers that pay for services.
But if that
funding kind of private
is available for overhead, is it not available for services?

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 4
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 6

Parents fear of retaliation by CCB’s and service providers - At the initial

meeting for we
Committee, the and
Interim
others mentioned several times that there are parents who
have experienced
retaliation from their CCB or Service Providers when they complain. These
individuals
forward will nottestimony
to provide come for the committee. Attached you will find some
information
in May, 2007, fromthata offered
survey such parents a way to communicate their problem.
(Attachment
We parents who # 5) contributed to this paper face the same fears. However, we
find ourselvesour
communicate ableissues
to with you because you opened the door for a real
discussion
feel we need ontotherepresent
issue and we
everyone. In some ways, we feel it is the
responsibility
the courage toofcome thoseforward
who dotohave
tell you about those who are unable.

Other states are doing great things – We have difficulty, as parents,

understanding
states have been why many
able other quality services in a timely manner while
to deliver
Colorado cannot.
understand We of
that some do it has to do with money. However, some of it is also
because
made thissome states have
a priority. Ultimately, the states which have made this a priority
have done
values: so because
a good society of moralsure that its’ most vulnerable citizens do not live
makes
their lives in danger and
squalor.

Many other states have similar low tax burdens to Colorado, and yet are
providing
lists. services
We have withoutmany
compared wait things to other states in developing this paper.
The
look states weaschose
at, such to
Massachusetts, have similar tax burdens to Colorado overall.
Taxes asina Massachusetts
income percentage of were 9.8% whiled Colorado was 9.5%. In California,
th
it was 10.3%.
which ranks 50Alabama,
in the State of the States, also has the lowest tax burden
st
1 in the State of the while Rhode
States, is inIsland,
the topwhich
10 in ranks
terms of tax burdens.
(Attachment #2)
New Hampshire just passed a plan to eliminate the wait list in two to three
years. Brian Partners
Community Collins from
of Strafford County New Hampshire is a potential contact
for information
what aboutNH has 10 regions and about 300 people on the waiting
they are doing.
list.
No comprehensive, unbiased evaluation - Even though we know that
Medicaid
and some conducts
CCB’s claimevaluation,
they conduct evaluation, there is no comprehensive
outside evaluation
system. of the
No evaluation of CCB
what people who are on the wait list are doing. No
evaluation of of
effectiveness theprograms;
actual nothing that clearly correlates the delivery of a
servicewords,
other to actual results. isInconducted on an “output” rather than an “outcome”
evaluation
basis.
stress Again, we must
that TREA requires evaluation, and that evaluation must be independent
of case delivery
service management and anything.
to mean

Furthermore, when surveys of parents are conducted, it is usually easy for the
parent
the CCB.to be identified
There by 3rd party confidential system, in our own
is no real
experience.
respond Parents
or they simply
provide doglowing
only not reports so they will not make anyone
mad.
People are dependent on the system because there are no other options.
People who
working and can workhealth
getting are not
benefits. The system is set up to create dependency
on it, even
would ratherwhen parents
not be dependent.

Lack of transparency means that problems are not addressed in the

system a– support
formed A groupgroup
of parents
called Pad-CO (Parents of Adults with Disabilities in
Colorado)
process of and began
asking a for answers to questions posed by parents. While
CCB’s
some
many CCB’s did respond,
of the questions were left unanswered. (Attachment 7).

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 5
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 7

Potential Solutions
Rep. Garcia has outlined an agenda for the Interim Committee to focus in
certain areas.
proposals He has
on ways to asked
addressforthe named issues outlined in HJR 1043. The
following potential
are outlined accordingsolutions
to those same subjects.

1. Introduction and Overview – What is the Problem?

We believe some of the problems are in the system, not only for those on the
wait list, but
receiving also for
services. Wethose
have attached our personal stories as our written
testimony
those who specifically
are waiting addressing
and those who are receiving service, as outlined in the
agenda forsome
also have meeting one. represented
families We who have done everything for their
children
CCB on their
supports own with –nowho prove the ramifications of not having other
whatsoever
supports outside of
themselves.

However, parents are not privy to a great deal of the information needed to
explain
We oftenthedon’t
programs to you.what we are waiting for, let alone the intricate
even know
operations etc.
Medicaid, of CCB’s,

2. TREA – Transparency, Reliability, Efficiency, Accountability

We present the following ideas under the TREA category, from the perspective
of parents:
• Evaluate the entire DDD/CCB system using an outside evaluator to
determine if it is the
effective, efficient most
way cost- services. This has not ever been done,
to provide
• to our knowledge.
Adjust the salaries of CCB executives to be more in line with State salary
scales; and
salaries in line with
for similar work in the other states we have looked at (California,
Massachusetts, and
Minnesota). (Attachment #4)
• Allow parents to opt-out of the CCB system and use a different type of
payment
with system,
a type possiblyor voucher system to pay for services we need in
of cash/card
aMexico’s
fashion “Mi
similar to system.
Via” New Some parents would like to receive funds
allocated
form in IP's
so that in "debitor
a consumer card"
family can also contract directly with
providers who are Medicaid
approved.
• Develop a method of unbiased, outside evaluation that measures
outcomes, the
correlates not provision
outputs, thatof adirectly
service with a measurable result; provide
penalties
when theyfordoservice
not meet providers
target metrics, and when complaints against them
are judged
There must tobehave merit.
an independent “feedback loop” within the system to force
the desired
must results.between
be linkages There DD services and key state departments, e.g. the
Health Dept.,
detection to assist inof problems.
and correction
• Write civil rights for people with disabilities into Colorado law, as has
beenindone
Act with theThe
California. Lanterman
desired principle is this: people with developmental
disabilities
right to the must haveand
services thesupports they need, such that they, and their
families,
similar tocan live who
people lives do
thatnotarehave disability in their families;
• Review the organization of the delivery system in Colorado. A possible
proposal is attached
consideration. for your
(Attachment #6 )
• Mandate that CCB's provide online training for their provider certification.
This is much
and time moreand
efficient costcould lead to more people willing to become
 certified.

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 6
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 8

3. Innovation
We present the following ideas under the innovation category, from the
perspective of parents, in these
categories:

Education: Transitions, Higher & Continuing Education

There are many people who could be taken off of the wait list if they had
accessobtain
could to higher education
degrees and
and certificates that would lead to more success in the
workplace
them. Someand jobsare:
ideas to support

• Develop a degree program in the community college system for people

withVenture
the disabilities modeled
degree afterof Bellevue Community College in
program
Washington.
(http://bellevuecollege.edu/venture/).
• Create a student loan program for people with disabilities so they can
afford tothe
without getneed
moretoeducation,
be in a degree program.
• Provide more support for the Transitions programs in the education system
to helpcan
adults ensure that young
get jobs and transition into work life to lessen their dependence
on the system.
Create a grants program for other nonprofit organizations that could
•
provide more
adults with education for
disabilities.

Employment
• Identify State, City, and County employment opportunities that could be
transformed
people into jobs for Disabilities. Provide training for supervisors in
with Developmental
these
so government
they can support offices
people with DD in the workplace. Publicize these
jobs. Work to
the School with VocAlliance
Work Rehab, Program, and others to fill them.
• Convene business leaders through the Chambers of Commerce to come up
with ajobs
more planfor
to people
providewith DD in the workforce, and an incentive to do it.

Case Management
• Provide true case management without a built in conflict of interest that
evaluates (both
available all resources
through the CCB system and outside of the system) to a
family
resourcesandandcoordinates
distributesthose
information on those resources to the families.
• Develop an objective, unbiased system within this State which can
realistically
with DD as classify each person
to their level of need. Until this is done, resources cannot be
allocated
State. fairly
If the SISacross the Intensity Scale, currently being implemented
(Supports
by the
will notstate
work,DDD) system
consult other states with highly-regarded DD systems to
find out how
Mandate they did it. features on CCB websites so that
"cart/checkout"
•
families/consumers
providers and directcan theirdirectly access This would eliminate the need
own programs.
for many manThe
management. hours of case
money saved in case management hours could be
redirected
and into service
providing direct services
to wait listed persons.
• Mandate lists of providers, their services, the programs they are available
for
their(SLS,
HOURLYFSSP,etc.)
FEE on andCCB websites. There is too much secrecy about
how the
and much providers
benefits they are paid
receive.
Other
• Offer a tax credit for providing housing for a disabled family member or
somewould
that property tax relief,
increase etc. incomes (to apply to our children’s needs)
families’
without raising taxes.

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 7
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 9

4. Elimination of the Wait List & Funding Options

Elimination of the Wait List requires public support, getting people off the
wait listthemselves
support that could actually
with a little assistance, reducing wasteful spending, and
more funding from different
areas.

Our ideas in this area are to:

• Somehow tie new funding to growth through fees to developers or a head
tax
the for people
state, movinga into
purchasing home here for the first time, or any other means to
• tie a fee
Evaluate to growth.
those who are waiting and provide other options to those who
could managers
Case be working at this
need time.families resources.
to offer
• State-wide referendum

What We Want Most

Every parent will give you a different answer to the question: What do you
want most?
alone, Inhave
parents our group
said their number one desire is:
• Write civil rights for people with disabilities into Colorado law
(Entitlement
of California).like the Lanterman Act
• Reduce the wait list by providing access to education and jobs for those
who are the
penalize ableapplicant
and don’twhen they do need services.
• True case management, separated from whoever does the delivery system,
with parentthe
Eliminate rights.
wait lists.
•
• Reliability in the service delivery system, so that parents can actually go
to their
and not jobs
haveand doconstantly
to be them, leaving work.

The bottom line is the same, however. We want our children’s lives to match
the livesasofpossible.
closely typical kids as

Our constraints & challenge

As we said earlier in this paper, we do not know as parents how else to present
youare
we withnotthese
paidideas,
to do as
this work, nor do we have access to what it currently
costs
impactorthe
how our ideas
financial wouldWe have to rely on you, our representatives, to
picture.
help us
ideas byyour
into incorporating our potential legislation that comes from this
thinking and
committee.
Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 8
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 10

Contact Information
The following parents, people and organizations support this document.

If you have seen something in this document that you would like to talk to us
more about,
any one please contact
of us.

Denver C. Fox, Ed.D. Gerrie Frohne Sheryle Sonja

303-773-3890 303-986-0482 Hutter
303-364- Davis
Aurora,
dnvrfox@aol.com gfrohne@ecentral.com 3840 CO
Parker, CO rockymtnmom2@aol.com
Lakewood, CO Aurora, CO

Renée Beauregard Ed Arnold Sam Towers Diane

303-766-2050 303-442-2133 970-554- Winkley
Pueblo,
amazonb@worldnet.att.net era@ucar.edu 1886
Otis, CO CO
Aurora, CO Boulder, CO

Renee Walbert Liz Wuest Sherri & Bob Dawn

303-328-7230 303-904-0117 Martin
303-671- Hunter
303-
reneewalbert@msn.com famwuest@msn.com 2595
Aurora, CO 794-
Littleton,
Denver, CO Littleton, CO 2133
CO

Lynda Brandt Susan Luff Verlene

303-604-2726 719-573-8690 Betzen
719-532-
l_bradt@msn.com 0183
Colorado Springs, CO betzenv@aol.com
Lafayette, CO Colorado
Springs, CO

Attachments:
1. Representative biographies of some of our children
2. Coleman Institute State of the States Report combined with State by State
taxAnalysis
3. burdens of CCB Director Salaries
4. Comparative salaries of similar agencies in other states, and other
administrators
5. Retaliation Survey Results – and selected stories
6. Proposal for Reorganization of the DDD system
7. Pad-CO Hotline questions and responses (or lack of them)
Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 9
Parents’ Views on the Problem & Potential Solutions
July 3, 2007

Page 11

Attachment
Representative Biographies of Some of Our #1
Children
Kyle – age 25 in August
Wait List Status: Receiving Family Support,
on Wait List for SLS & Comp
Services
Years on Wait List: 5
CCB: Developmental Pathways

Kyle has a rare genetic disorder that carries with

it a long list
disabling of co-existing
conditions and medical problems. Some
of his other
include ADD, diagnoses
PDD, Sensory Integration
Speech and Language Problems,Dysfunction, Learning
Mental Health Disabilities,
issues, Oppositional Defiance
and behavioral
Executive problems,
Functioning/Cognitive Impairment, plus a host of medical problems
related to his condition.
th
Kyle is a “high functioning” young man in some ways, who achieved 4 grade
after being in special ed classes during his time in school. And yet, Kyle has level
so many
and cognitive
short-term issuesproblems that he is often unable to perform tasks
memory in
withinasa demanded
time, reasonablebyperiod of
the workplace. In school, Kyle was bounced from one math
school and program to had to be placed in off-campus programs for kids with and
another. In the end, he
reading
severe
behavioral/emotional problems.

Kyle has held several jobs, but has been fired from all of them. He has had job
coaches the
through in every instance
Transitions program and the School to Work Alliance. One of his
employers
because of even fired him
something his job coach said about him! Kyle has received services
from Vocationalwhere he was placed in a work adjustment program to work on
Rehabilitation,
his behaviorThat
workplace. in the
program dismissed him because of his behavior. Kyle has not
worked
and has since thatno
received time
help until recently.

Throughout the years Kyle has lived at home since he became an adult, he has
had no services
mentioned. but those
Therefore, he spent his days in his room playing with toys and Yu-
Gi-Oh
TV. Hecards andfriends
had no watching
and no social life other than Special Olympics twice a
year. His
started mother had
a business years before so she could at least be at home with him
during the day.
increasingly Kyle became
depressed and frustrated with his life and started taking it out on
his parents.
divorced dueKyle’s parents stress and strain.
to tremendous

Kyle’s parent’s moved him into an apartment that costs him 68% of his SSI
check. Because
disability isn’t asKyle’s
obvious as for other people, Kyle’s parents made the
decision
Kyle would to learn
able whether or not of a group home situation so they could plan
to live outside
for difficult
so his future. Since
to live Kylethey
with, is decided he should live alone. Kyle has really
needed
daily SLS skills
living to helpforhim with
independence but SLS is not available to him. His
parents
making feared
progress if Kyle
towardwas not his own life, the belligerence and enormous
having
behavior
home issues
would he hadtoatescalate.
continue

Kyle is starting to work with Voc Rehab again recently because of the Social
Security Ticket
Program. to Work
His dream is to go to college. His mom is crossing her fingers.
Family Support ($200 per month) has paid for Kyle’s tremendously large
dental billsand
insurance) (after dentalwith a counselor to help him cope with having a
therapy
disability.
mother Other no
receives than this, Kyle’s
information or support for him from her CCB.

At one point, Kyle’s mother sent a desperate e-mail to her case manager after
Kyle hadtobecome
difficult manageextremely
in the home which read:

Page 12

Kyle…continued

“I'm writing to ask you if you can give me some information about what
housing options
available MAY
for Kyle oncebehe gets his SSI and we reach the top of the waiting
list. I need
hope. somehim
Life with small bitvery
is so of difficult.”

Her response was:

“The adult service waitlist is a statewide resource which means the list does
not move enrolling
currently that fast. kids
We are
with the eligibility date of fall of 2001 for Supportive
Living Service.
eligibility date isKyle
May of 2002. That does not provide out of home placement.
The comprehensive
service waitlist is very very long, which provides out of home placement. SSI
will give
toward you more
housing funding
if you are a looking for Kyle to be out of home, but at this
time
of theDP hasprograms
adult no slots inthat
either
would be funded by the state. If Kyle would be out
of home
pay youout
for that would have
of his SSItoor his own pocket.”

Kyle’s mom replied:

“So there's basically no hope. I don't know what a family does when hope is
gone.”
The case manager never responded.

While Kyle’s mother understands the position the case manager is in – and
others
left before
their jobs her who
at the havebecause they spent their days not being able to
CCB
providethat
accept anythere
hopecan’t
– shebedoesn’t
a better way.

The sad part of all of this is if Kyle does need a placement because he is not
successful
place, livingmanager’s
the case in his ownsuggestion will not even work. SSI would not cover
the cost of and
placement out his
of home
parents do not have money to pay for it. Kyle’s parents are
very worried
happen. thatSupported
Without this may Living Services, Kyle’s parents are constantly
waiting for “that phone call.”

Name: Johanna -- age 23

Wait List Status: receiving SLS, on wait list for
comp
Years on Wait List: 9 (since age 14)
CCB: Imagine

Johanna (Jodi) has been jokingly called an "old-

fashioned girl"
pediatricians by some
because she has quadriplegic athetoid
cerebral palsyThis
components. withwas
spastic
a more typical disability
prior
palsy to about
was 1975.
caused by Her cerebral deep and
exceptionally
lengthy
time asphyxia that occurred at
of birth.

Jodi's primary diagnoses are quadriplegic cerebral palsy and legal blindness.
Theadulthood,
in pattern ofled
damage
to onehas,
incompletely-formed hip and shortened leg on that
side.
these Functionally, Jodi has
deficits: she cannot stand, sit-up, crawl, feed herself, toilet herself, or
pick up and
excepting holdeasily-grasped
large, any object objects while she is side-lying. Jodi is non-
verbal. Because
physical deficits,ofJodi
herrequires 24-hour total care.

Nonetheless, Jodi's zest for life is obvious, and one might even say,
contagious.
happy personSheforiswhom
an exceptionally
the extent of her disability does not seem to matter.
Because sheissues,
behavioral has noother than a very obvious reaction to music she interprets as
sad, those
care for herwho provide
regard it as a positive experience. However, the physical aspects
of her care
majority of are
her difficult for a due to the necessity to lift her between bed,
care providers,
couch,
shower wheel-chair,
chair, and van.stroller,

Page 13

Jodi..continued

Jodi's parents were able to maintain her weight via hand-feeding for 21 years.
However the
constraints severe
this time
caused created problems within the family. When Jodi left
school atofage
services her21para-educator
and the were lost, Jodi dropped down to 63 pounds. The
parents
have made a(Mickey
a g-tube decisionbutton)
to implanted in 2006, which eventually brought
her weight
pounds, andback
made upthe
to 80
care situation more manageable for parents and other
care-providers.
Jodi's parents have managed the situation because Jodi's mom abandoned her
plans to full-time.
half- or re-enter work
Jodi'seither
dad has maintained a near full-time work schedule,
helping toand
evenings provide care Jodi's mom has converted her work to occasional
weekends.
subbing jobs
weekends, at libraries
when on care providers are available.
dad or other

Jodi's parents are quite concerned about the obvious downturn in services to
the DD population
Colorado in 15 years. Jodi's mom has an unstable shoulder and
over the past
other skeletal
problems andtomuscular
related 23 years of lifting. Jodi's dad has had a 15-year stress-
related illness
thyroid failure that
and led to
neurological disorders. Both parents are concerned that the
downturn
in Colorado in means
DD services
that the comprehensive services that Jodi will require will
not bethey
after available until long
have become physically and/or financially unable to care for her.

Andy -- age 40 in August

Currently Receiving Comp Services
Years on Wait List prior to receiving
Comp Developmental
CCB: Services: aboutPathways
10

Andy has been diagnosed with

“pervasivePalsy,”
“Cerebral developmental disability,”
“brain injury,”
“seizure disorder,”
disabled,” “profoundly
“hyperactivity,” “perceptual
disorder,”
challenged”“behaviorally
and a variety of other
hospitalized numerous times, including alabels. As a child,
near-death Andywith
experience was
continuous seizures
epilepticus). In 1998,(status
Andy fell out of bed and was paralyzed from the waist
down (the injury
aggravated was osteoporosis). After 3 months in Craig Hospital, his
by severe
family
in and others
intensive spent 2 with
rehabilitation yearsAndy so he could regain use of his legs.

Andy currently lives in a “host home” with a loving caretaker. Prior to the
“host home”
parents, he lived
Denver (now with his Nora (now 69). He has a brother, Tim, who, in
67) and
1986,
the was paralyzed
shoulders down infroma sporting accident. Tim, still totally paralyzed, is now a
well known
attorney, civilgraduated
having rights from Stanford Law School, and has a law practice
with his wife,
attorney, Amy and fellow
Robertson.

Prior to the “host home” Andy lived at home until his early thirties. For almost
all of those years, his
all of those
parents had years, his no respite nor opportunity to be alone, to engage in
absolutely
church, recreational
activities. It was onlyornear
social
the end of those years that some family respite was
provided through
instituted “family newly
support” funding.

During his early school years, Andy was not allowed in the public school
system.
13 hour We set upseven
per day, an intensive
days per week home therapy and educational program
using over
over six 350 until
years, volunteers
PL 94-142 passed, requiring the public schools to provide
services todisabilities.
profound those with

Page 14

Andy…continued

Andy’s day program has been problematic since the program his parents ran
for himMountain
Rocky and others,
Jobthe
Opportunity Brigade, had to close in about 1999. This
program,
father, designed
served Andybyand
his16 other individuals with profound disabilities and
marked
in a realbehavioral
communitychallenges
work environment. At that time, the DDD system allowed
no more
with funding
profound for those than those with minor disabilities, and despite
disabilities
extensive fund
adequately raising,supported
financially it was notby the “system” and had to close.

Over the years we have had continuous and never-ending meetings with the
CCB to“case
staff havemanagers” and developed to meet his needs. We were told by
a day program
Developmental Pathwayscase
Andy had five different thatmanagers this past year. Sometimes, we don’t
even know
weeks their
ago we names. Five
requested a funding increase from DDD to better provide for his
needs. lost
seems Thatinrequest now
the bureaucracy. I have asked for an update, but have received no
further information.
So, even at this moment, it has been a continuous struggle and fight by his
parents totofind
program anAndy’s
meet adequate
needs. At times, his caretaker must come and get him
from theofcurrent
because program,
behavioral challenges. We (his parents) are always on pins and
needlescall.
phone awaiting that “next”

We look at the future with dread. We will die before too long, and there is no
adequateand
support system to provide
advocacy for Andy. We have made his brother the co-guardian,
but
haveit to
is assume
a shamethis
for responsibility.
Tim to Andy has no relatives who have the
slightest interest in him and his
welfare.

Aaron, age 20
Currently on the wait list for SLS & Comp
Services
Years on Wait List: 6

Aaron is on the Wait List for both the SLS and

Complist
wait waivers. He went
right away at ageon14.theHe is now 20
years old.
Once a year we get a visit from a case manager
at our
he CCB,
is on and we
the Wait Listsee
(ifwhere
I can believe those
numbers)
for Familyand we areforable
Support to apply
a little assistance in the
meantime.
paying for But
campother
last than
year help
(camps for kids with
expensive than your local scout disabilities
or churchbeing waywe
camp!) more
haven’t accessed it much.
All of the that
programs services
Aaronand
has accessed, we found on our own and in fact, often
have served as over
case managers resources to theletting them know about things available to
the years
families.
Aaron already lives on his own through the EBD waiver (he has physical and
medical needs
cognitive) and in
weaddition
use the to
CDAS model (which means we hire, train and
manage our own attendants).
He wouldn’t actually be able to use an SLS slot the way they are traditionally
fundedwould
needs (his home care than those waivers usually supply) and you can’t access
cost more
two waivers
time. So rightatnow,
the same
we give up the community support that SLS would have
provided
home careinwe
order to under
need use theEBD.
A comp waiver would address all that, but I’m confused about how that would
look. Ifhome,
group he went to a have enough money allotted in his waiver, in theory, to
he would
pay his food,
support. lodging,
And all and
his SSI money, except for a small personal allowance each
month (enough
pizza and some to buy one would go to whoever was the provider.
shampoo)
But he has a section 8 housing voucher and uses it to pay for his apartment,
and
SSI then
to payuses
his the restphone
cable, of his and electric bills as well as groceries. But he has
more left
under the over
compthan he would
waiver to pay for pizzas, coffee shops and movies. If he got a
compup
give waiver, would8?heOr would he keep it and stay in his apartment, but then
his section
his home health needs

Page 15

Aaron…continued
would be paid for under comp and if that’s the case then in theory the DD
system less
paying and than
Medicaid
if he would
didn’t be
have a Section 8 voucher?
And if those vouchers help shift costs in the system, are we advocating at the
federal/state level to of vouchers available to folks with DD? Aaron wants to
increase the number
alive in his
group ownorplace,
home a hostnothome.
in
Anyway, it’s just a flat out confusing system. If Aaron didn’t have us to
advocate for
suddenly out him,
of theand if we ifwere
picture, the state were to come in and assume
guardianship
entity) (or give
they would it tohim
place some
in aother
nursing home. And because nursing homes
are funded
different under yet
Medicaid a
funding mechanism, there would be those funds available
for him. Yet
cognitive even withwith
disabilities, his a lot of support, he’s able to live on his own—but
only because
EBD he gotitsthat
waiver. And cost is less than if he were in a nursing home. Frankly, a
nursing home
appropriate is never
option anyway.an So if there is money for a nursing home waiver,
why not
which for less
costs a compand waiver
encourages him to be a valued member of his
community?
Aaron lives in Congress Park, and the merchants and neighbors he has met
this last
value year
him. know him
Everyone callsandhim Smiley, and he is a valued member of his
community.
maintain that.He wants to
We moved him to his apartment and subsidized him till he got a Section 8
and getting
voucher was thatunto itself.
a miracle
Aaron has a girlfriend who also has developmental disabilities, she lives in
Colorado
would likeSprings and theysome day. We won’t even go into how complicated
to get married
trying to move
community from one
to another is!
Does Jane Q citizen even know the difference between an EBD waiver and
one of thenot
Probably DDand
waivers?
they probably don’t care, but it’s a huge thing in our lives.
And then trying to explain those complexities— explain the phone calls we
get fromhis
manage Aaron,
money,helping himbills, assist him in making good health decisions
pay his
etc. would probably
overwhelm anyone, especially anyone who has no background what so ever.
We’ve
out had as
as best to we
try can.
to figure
Someit days I think we have a handle on it, but then I get
sick
wrong or and
something
it can allgoes
come crashing down around us like a card house. I have
given upover
income much theinyears
the way of I’ve had to work from home and be flexible in
because
order to meet the kid’s
needs.
Deidra, age 17 (Aaron’s sister)
Deidra, our 17 year old, also has
medical
and is a and
littledevelopmental issues
person and legally
blindlist
wait besides.
at ageShe
14.too went on
I expect thatthe
her
needswaiver.
SLS could be Butmet through
I can’t eventhe
see the
end and
her of the
thetunnel in terms of
wait list.
She too would like to get married
some day;inIplace
supports hope by
shethen
has because
more
it’s complicated
with a disability!having a spouse
 "Alan" (Pseudonym) - age 36
Wait List Status: Receiving DDD Comprehensive
Services
Years onsince
Wait8/03
List: 18 (from age 14, when 1st
eligible for "The List"Disabilities Resource Center
CCB: Developmental
(DDRC),
Photograph:in Alan
Jeffcopreferred that his photo not be used

Alan has lived in CO since age 7. He attended a segregated school for children
with disabilities
16, when we wereuntil ageto extricate him (against school district desires) to a
able
typical Jeffco high school,

Page 16

Alan…continued

where he was able to enjoy attending regular classes and contributing on the
yearbook, newspaper
Student Council. and
He enjoyed attending school sports events and school dances.

Before graduation, with the help of excellent physical and occupational

therapists,
jobs: one washe began
rubber2stamping
part-timelibrary materials at the Golden Public Library
where he still works 15
years later. The second job is running the clothes conveyor at a dry cleaners;
he continues
for his 4th drytocleaners
do this job,
owner. These jobs are possible with the help of very
creative, state-of-the
technology. art able to move any body parts except his eyes, his head
Alan is not
(less than an
a switch), andinch to access
recently an inch to access a switch with his hands through
dedicated
(True that Feldenkrais
we are never Therapy.
too old to learn!)

Prior to Alan's coming off of the DD Comprehensive Wait List (due to the
very unfortunate
another young man),deathheofand I were living in our family home, two siblings
having
on. I hadgrown
had aupheart
and attack
movedand was very stressed caring for Alan's daily needs
and
weekworking 20 hours
on graveyard perbecause Alan's nighttime care was cheaper than his
shifts
daytime care
hygiene, (feeding,
his work and recreation). His care is 84 hours out of a possible 168
hours
the in a weeksleep,
caregiver's (thenpaid
add employment,
in getting groceries, and an occasional
shower!)
how I didthis
difficult not challenge
realize was until I was no longer doing it.

We were able to find a very good provider for Alan's Comprehensive Services.
R and
into ourhisfamily
wife moved
home to provide 24/7/365 services. R became his own agency,
so that
pay he didtonot
15-30% have to agency between himself and the CCB. Alan wanted
a provider
to havedays
during the same caregiver
and nights because Alan is non-verbal, has an eye-gaze
communication system
"miscommunication" and feared
between caregivers. R is the total care provider, but his
wife, grown daughters
grandchildren now round andout Alan's "family". Alan's provider receives $90,000
in
thetaxpayer
care thatdollars forwould have to provide, if R was not willing to do this
4 nurses
very stressful, physical work.
Due to Colorado DDD rules, a family member (myself) cannot live at the
same address
receiving DD as someone
Comprehensive Services. So I must unnecessarily spend $7000
for apartment
while expenses, master bedroom/bath go unused at Alan's house (our
an "apartment-like"
formerISfamily
THIS JUSThome).
PLAIN STUPID POLICY and needs to be changed! The $7000
would go toward
wheelchair futurevans, or major house upkeep (roof, etc.).
accessible

No living arrangement is perfect, and Alan has experienced some recent health
concerns.
can believeAsthat
a mother, I
"pneumonia, pressure sores, possible conversion to Gtube
Ifeeding" would
were still caringnotfor
be Alan.
issuesHowever,
if at 67 and unhealthy, my returning to full
time care givingshort
unrealistic-and is term. But Alan's quality of life (Bible study and church,
playing church
Dynavox music on adevice, loving his jobs, cheering on candidates,
communication
attendinggames,
Rockies Broncos,andNuggets
enjoyingand
social events with his siblings and their children)
is good. that
remains Let'sway
hopeafter
it I'm dead.
 Ron -- age 40
CCB Services – Never applied or received
services
and as he
has had has lived at home
a job.
Don Jr., Age 43
CCB Services – Although fully disabled and
unable
for to work,
services doeshis
because notdisabilities
qualify do not
include a developmental disability.
Ron suffered a lack of oxygen during childbirth and was deemed
developmentally
Upon evaluation disabled
at age 4 from birth.
we were instructed by Children’s Hospital that Ron
would
hold a never
job andread,
thatwrite, or institutionalize him. We refused to believe that
we should
this succeed
not beautifuland
child would
sought out the best public education opportunities to maximize
his abilities, we spent

Page 17

Ron & Don continued….

thousands of hours working with him at home to support the education that he
th
was receiving
his success. Weandarepromote
so much more fortunate than so many in similar situations
as Ronlevel,
grade can read
he isata awhiz
4 with the computer, and he has a job that he has been
at for 17 years
Education (Special and he is an asset in the community. All of us are
Bus Assistant),
so fortunate and
functioning that able
Ron tois be
high
relatively independent.

Ron received SSI and Medicaid for a short period of time during his teenage
years but with
from mom, a lot
dad, andofdevoted
help teachers during high school he was able to get a
job of
out thatthe
allowed
system.usWeto get
never applied for other services as we knew how
many people
services with were
muchwaiting
greaterfor
need and hoped we could handle the situation
within our family.
Our older son Don Jr. (43) is fully disabled and unable to work. He has
physical andwhich
disabilities neurological
are fully disabling. Don,Jr’s issues did not surface until he
was 27 years
applied old. He
for SSDI, SSI, and Medicaid and finally after 6 years of appealing
denial afterfrom
assistance denial andReisken
Julie with at Colorado Cross Disability Coalition he was
finally approved for SSI and
Medicaid.

In addition to serious disability, Don Jr. is surviving a bitter divorce that has
made
worse.his Hemedical
attemptsissues even independence and with a lot of help and
to maintain
communication
been able to remain withfairly
friends has
independent, still living in a rural community on the
western
CCB slope. would
services Although be such a big help to Don Jr. as he strives for
independence,
for CCB services he asdoesn’t qualify
he is not developmentally disabled. We provide a home
for him, he
system, unassisted
receives by the
Medicaid, Food Stamps of $139 a month and SSI of $443
per month
even coverwhich doesn’tover the counter medication, or gasoline to provide
his utilities,
transport toDon
pharmacy. doctors and the
Jr. wants to remain independent and we are tying to support
that desire.
We are getting up in age with Dad 65 and Mom 62. We worry continuously
about
our twowhat will happen
vulnerable sons to
should something happen to us. We are so much more
fortunate
other than so and
individuals many families that our son’s remain relatively independent,
however
without our feelassistance
certain that neither would be able to continue with the independence
they each currently attain.
Unless placed in the position, no one understands that for most parents,
obligation
reach the age endsofwhen
21 orchildren
become independent (financially and socially) however
when
it is a disability is an issue,
lifetime obligation of caring for, advocating, and protecting not only
their vulnerability
ultimately but
their life.

It is such a struggle to understand the system, not to mention having to fight

for every
road single benefit.
to eligibility Thebut even when eligibility has been determined the
is rough,
road to services
resources is full and
of chuckholes, wrong turns, and one way streets. This must be
changedbut
system to mostly
improvetothe
help the individuals and families to meet the second to
second demands of disability.
Thank you for providing me the opportunity to share.
 Name: Christopher – age 19
Wait List Status: receiving SLS, on wait list
for comp
Years on wait list: 5 (since age 14)
CCB: Imagine

Chris is a delightful, smart young man who has

autism, sensory
difficulties, ADHDissues, speech
& encopresis. He has some very
good very
does skillswell.
and He
withissupport
an only child of his divorced
Mom.

Page 18

Chris…continued

He was diagnosed with ADHD in kindergarten, then PDD-NOS, then

Aspergers with
diagnosed and atAutism.
age 11His
wasMom started her own accounting business when
Chris the
have wasflexibility
8 yrs in order
to be to
able to take Chris to the numerous therapies and
doctor
go appointments
to the school whenascalled
well as
upon which generally amounted to at least once a
week.
Chris graduated from high school last year and is currently in the transition
program
Mom through
thought thatBVSD. His graduated her life would be easier. To her
once Chris
amazement
the support she
Chrisfound
needsthat
to giving
succeed took much more time. She estimates that
she week
per spendskeeping
at leastChris
20 hours
on track and successful.

Because of the hard work of Chris’ Mom he works part time at the County
Assessor’s
at office and
a local stables. part does
He also time some volunteer side walking. He took
therapeutic
years riding lessons
and became for 10rider and has rode in competitions. His passion
a very good
is to work
horses. outdoors
In order with to get to all of his activities and allow his Mom to
for Chris
workhad
She shetobought
decidehim a car.being a full-time chauffeur and support person,
between
which
or buy was
him out of His
a car. the question
insurance alone costs as much as he makes at the
Countypeople
young Assessor yetstill
he is unlike typical
unable to work full-time to pay for this. Without his
carthe
to he stables,
would be unable
which to get
is not on a bus route.

Chris is generally a happy guy but has his moments of depression due to lack
of friends, He
activities. direction
would and
like to live on his own but is unable to because of
finances
supports and the necessaryHis Mom keeps him as busy as she can but it is not
are unavailable.
enough. He SLS
Emergency recently got because his Mom was having a tough time working
services
and helping Chris.
Chris’ future is very bright given the right support system. It is conceivable
that he could
become at some
an active time member and work full-time.
community
 Page 19

Attachment
Coleman Institute: State of the States, 2005 plus state tax burdens, 2
population & growth
Page 20

Attachment
3
 Page 21

Attachment
Comparative Salaries for Positions Similar to that of the Executive 4
Director of a Community Centered Board in Colorado
Every state has a different system. Not all states contract with nonprofit organizations,
thereforetoit obtain
possible is not IRS 990’s. Therefore, we contacted some states:

Minnesota (tot. state pop. 5,167,101): “Salaries in MN for regional DHS positions are in
the $60,000range plus benefits. Benefits are typically $5,000 additional annually.”
to $80,000

Massachusetts (tot. state pop. 2006 est. 6,437,193): “There are four Regional Directors with
an averageDirector salary of $100,000 and additional benefits of 30%. The four RD’s manage
Regional
18 Area Statewide.”
Offices

From California
California has 21 Regional Centers. These centers provide the same services as Colorado
CCB’s. The
following sampling of salaries and numbers of clients served (where reported) are taken from
most 990’s
IRS recentlisted on Guidestar except where noted. (Note: California’s cost of living is
significantly
higher than Colorado’s).

Regional Center of East Bay-Oakland, CA

Executive Director Salary-$179,000 plus $25,000 in benefits.
Annual Revenue (FY 04-05) $184,696,074
11,000 clients served

Central Valley Regional Center - Fresno, CA

Executive Director Salary of $153,000 plus $23,000 in benefits
Annual Revenue (FY 05-06) $139,874,110
13,113 active clients

Alta California Regional Center- Sacramento, CA

Executive Director Salary of $138,433, benefits $28,000
Annual Revenue (FY 05-06): $218,437,590
11,400 persons served according to their 02-03 Client Satisfaction Survey.

Inland Counties Regional Center - San Bernardino

Executive Director Salary of $153, 000 plus $33,000 in benefits
Annual Revenue (FY 05-06) $206,608,503
21,578 persons served

Regional Center of Orange County – Santa Ana

CEO Salary of $192,951 plus $72,227 in benefits
CFO Salary of $132,418 plus $33,843 in benefits, COO $120,019 plus $46,243 in benefits
Annual Revenue (FY 04-05) $158,383,355
23,424 persons served

North Los Angeles County Regional Center – Van Nuys

Highest paid employee: Clinical Svc. Director $164,153 plus $32,987 in benefits
Annual Revenue (FY 04-05) $160,849,773
 Persons served: Not available.
Other Salary Comparison: School Superintendent
We believe that an Executive Director of a Community Centered Board has
responsibilities
duplicating almost
those of a superintendent of schools.

In FY 2004/2005, the Superintendent of Jefferson County Schools in Colorado earned

$167,247
typical plus
state and county benefits, managing a budget over $550,000,000.00 and thousands of
children
and staff. The American Association of School Administrators reports the average salary of
Superintendents in the Rocky Mountain Region in 2005/2006 as $100,802

Salaries of Executive Directors and other administrators of

Community Centered
Boards in Colorado are shown on the Attachment 3.

Page 22

Attachment
COMMENTS FROM A RECENT RETALIATION SURVEY OF 5
PARENTS OFINDIVIDUALS WITH DEVELOPMENTAL
DISABILITIES
Question asked: Please tell us about your fear of retaliation. Why do you
have this
fear? Does it stop you from complaining or taking action in any way?

Response
Comment Text
Date

1. Whenever I question the services or why they won't provide what is requested, my Wed,
son's
case manager gets in trouble as does the provider. The administration seems so 5/30/07
9:21
intolerant of a parent questioning their decisions or lack of services and they blame the AM
case manager or provider. The reality is it is not their fault it is the administration that
makes the final decision.

2. Fear is just human nature & with the way these systems are set up my daughter has no Tue,
options because Colorado medicaid is horrific. Hell, half the time it takes weeks to 5/15/07
7:30
evenout who is in charge to complain to. Even stated to me "You better quit biting the
find AM
hand that feeds you."

3. I've had the experience of asking for more SLS funding for my adult child and getting Mon,
aresponse that left me feeling that calling attention has prolonged the stay on the waiing 5/14/07
9:34
list for comprehensive services. AM

4. With regularity, parents are told that to remain "in service" their child must x,y,or z, fill Tue,
in
the blank." We hear this as "the funding will be cut if you do not x,y,or z." What I have 5/8/07
5:39
come to understand is that this phrase means something altogether different. It means, PM
if our agency is going to pass the next inspection, we need to provide a service instead
of letting the local parents do it under threat of loss of funding. Suddenly the IPs mean
nothing, it's all about compliance. Make it look good on paper. And the hell with
actually
doing the job. The bottom line is more important than the quaint notion that service is
vastly satisfying and breaking even is a triumph. Profit must be had. As a business
person myself, I see no conflict. We are in business to make a living. But billing for
services not given, getting discovered, and then morphing services to the opposite of
the
contractual agreements, called IPs, is retaliation in my book.

5. My fear of retaliation is due to the fact that my child is non-verbal and could not report Tue,
any abuse or neglect she encountered by the school or the agencies. The only way we 5/8/07
5:32
would be aware of retaliation would be if someone from the agency/school made a PM
report or our child came home with bruises or bleeding.

6. I'm afraid my child will be taken off of the family support services if I say something in Tue,
my work that reflects negatively on the CCB. It's like they are keeping score and if you 5/8/07
10:26
get too many tick marks against you, then all of a sudden the "funding" has been cut AM
and
they are no longer "able" to serve you. Trouble is they don't stop to think that parents
talk to each other and so you know your kids money went to someone else who will
kiss
up to them and say glowing things until they get screwed and then they lose funding
too.
7.
7. I fear a "shutdown" in communitcation and an attitude of doing only what they are Tue,
required to do...no going above and beyond. 5/8/07
9:51
AM
8. I do not have fear of retaliation, I have fact of retaliation. It does not stop me from Tue,
doing
my job and advocating for individuals in services including my son. However, the fact 5/8/07
9:48
that they targeted my son and breached confidentiality resulted in no more than a letter AM
from the Division that the conversation at the meeting was inappropriate.

9. Each year the CCB sends out an "anonymous" survey supposedly checking on the Tue,
adequacy of services. However, the survey goes right back to the CCB, and the 5/8/07
7:32
questions, in my case, totally identify who is completing the survey. I never answer AM
these questions negatively because of worries that my child may have retaliation if I do.
So, the survey, in my case, never accomplishes its purposes.

Page 23

Retaliation Survey continued…

10. I am trying to choice to another disctrict. I am worried that if they know I have a Tue,
complaint in they wont take my son. 5/8/07
5:51
AM
11. I hsve this fear because after being in the system for 15 years, I know that if I persue Mon,
what my daughter needs, and the school can't/won't provide it, then the staff won't be 5/7/07
8:40
as
nice to her; they'll start to put her in the middle of the disagreement; the bonding falls PM
apart; and no one benefits in the long run. It certainly keeps me from acting upon some
needs. I try very hard to compliment, acknowledge, and respect all of the team players.
If I persued issues counter to what the district 'offers', then I'm the trouble maker and
hopes of getting anything is severely diminished.

12. I was worried that if I reported a problem with a teacher my child would be treated Mon,
worse. I should have taken it up the chain of command but worried what would happen 5/7/07
8:31
to my child if nothing was done? PM

13. When I am talking about the services my child recieves, or lack of services, and ask Mon,
people about it, ie teachers, transition team, other parents, I am told to be very careful 5/7/07
9:52
about complaining, who to talk to, etc. This CCB has been apparently known for AM
retaliation to professionals and parents. It does stop me from complaining and taking
action. I don't want my child to suffer because I opened my mouth.

14. Nothing worse can happen to you than to see first hand the power that can be applied Mon,
by the director's of CCB's unchecked by the state. I have been personnally arrested and 5/7/07
9:25
charged with trespass by a CCB director as a result of my activism. In the past when I AM
was much younger and radical I never failed to take action, regardless of the fear
tactics
employed by CCB directors. Today, now that I am older I am totally frustrated by the
inability to affect change, paticularly in promoting self-determination. Fear of
retaliation
has never been an issue with me despite my ordeals, but has been an effective rallying
cry for activism.

15. It happens so the fear is real Mon,

5/7/07
9:23
AM
16. It definitely stops us from standing up for what we believe should be happening for our Mon,
children. I have no doubt about that. During school years we were afraid that if we 5/7/07
9:21
"made the teachers mad" they would take it out somehow on our daughter. Now that AM
she's an adult, we sometimes see more pressure put upon her to "perform
appropriately" because we have been active advocates for her.

17. My fear is based on reality, and NO it does not stop me from taking action because I Mon,
have history and knowledge to tell me the only way to make change happen is to keep 5/7/07
8:41
chipping away at a problem. AM

18. Yes because the squeky wheel does not always get the grease, I have fears that if we Mon,
complain or take action we will lose what little services we have. That people will not 5/7/07
6:48
return phone calls or avoid answering questions if we become bothersome AM

19. I am always aware that what I say and to whom I say it may cause negative Mon,
consequences for my child with a disability. This has been true throughout his 5/7/07
4:35
 schooling
and especially in the adult CCB delivery system. Supervisors and others do not like AM
people with suggestions and ideas.

20. YES! retaliation is rampant within the system, the two cases that I have shared are Mon,
indicative and these are only a couple, I know of many individuals who have been 5/7/07
3:55
retaliated against by providers and the system. It does stop consumers and families AM
from filing complaints because it causes harm to the recepient.

22. it will not stop me Sun,

5/6/07
5:27
PM

Page 24

Attachment
6
Reorganization of the Colorado Service Delivery
System
* Convert the CCB's 501(c)(3)'s into line/staff direct service agencies
(centers) reportable
to the state.

* Do away with the 20 Boards of Directors.

* Set all salaries in line with other state salaries.

* Continue the functions of the CCB as previously, except eliminate

all of the public
relations, marketing, and "ain't we great" functions.

* Start the process of eliminating many of the financial functions of

the
not CCB which would
be necessary with the combined state processes.

* Keep (or set up) separate small non-profit "Foundations"

associated
"center" towith eachgrants
receive new and other donations for the new
organization.
* Set up an Advisory Council of parents and individuals with
disabilities for each new
center.

* Set up an Advisory Council (with some teeth) at the state level,

composed
majority ofofparents
a mandatory
and individuals with disabilities.

* Eliminate the CCB advocacy organizations (over $750,000 last year)

* Wait lists would be a statewide responsibility - one single statewide

wait list.
would beThere
portability between service areas. Once at the top of the
wait list, then
wherever the center
someone lives would be responsible for finding or
developing
placement. an appropriate

* Independent service providers would continue to be contracted

with, as now.
they could In fact,
become the backbone of the system.

* Those CCB's that provide services could have the option of

converting
function that
into service agency, either for-profit or non-profit, to
a separate
contract with the new
center.
 • The new center would be the Single Entry Point, and provide case
management.

Page 25

Attachment
7
SELECTED QUESTIONS AND RESPONSES FROM THE
PADCO HOTLINE.
CITIZENS AND CONSUMERS ANONYMOUSLY REQUESTED
RESPONSES
DIRECTORS FROM
AND ADMINISTRATORS. THE QUESTIONS WERE
SENTADMINISTRATORS
THE DIRECTLY TO FOR THEIR REPONSE. ANY
RESPONSES WERE POSTED ON THE WEB

QUESTION COMMENT
BY
AGENCY

Posted 2/23/2007

QUESTION TO CCB PARTNERS

During Fiscal Year 2005-2006, the official online records of the Secretary of State of We have
Colorado indicate that a registered lobbyist, Mr. Bill Hanna, received payments from CCB previously
awaiting
Partners in the amount of $14,000. requested
aExecutive
and are
response
Director
from
of CCB
However, on the IRS 990 filed by CCB Partners for the 2005-2006 Fiscal Year, in
Cami
Partners.
response to the question on the form on Schedule "A" Part III Line 1 Learned,

"During the year, has the organization attempted to influence national, state or local
legislation including any attempt to
influence public opinion on a legislative matter or referendum? If "Yes" enter the total
expenses paid or incurred in connection
with the lobbying activities,"

the "NO" Box was checked, and there was no amount of money entered in the
corresponding box.

A review of the Expenses of the CCB Partners, as listed on the 990, failed to turn up any
entry of $14,000 for lobbying.

So the question is:

1. If Mr. Bill Hanna lobbied for the CCB Partners, why wasn't it indicated on the IRS Form
990, with appropriate amounts of money entered.

2. Or, If Mr. Bill Hanna did not lobby for CCB Partners,
why is CCB Partners listed as a lobbying client of Mr. Hanna?

Posted 2/13/2007 Thank

you for
differences
pointing
in the
activities.
QUESTION TO DENVER OPTIONS out
We the
reporting
have
information
of
forwarded
on to our
their
lobbying
the
Auditor's
 their
lobbying
According to the web site of the Secretary of State of Colorado, a Mr. Nolbert Chavez, (Registered the
Auditor's
review
Lobbyist and an employee of the Lobbying Firm of Capitol Success Group) listed Denver office for
and
Joan
Options as his lobbying client for one or more of the following bills in the 2004/2005 Fiscal Year: resolution.
Marwitz
Director,
Denver
Options
The Secretary of State lobbying records indicated that Denver Options paid Mr. Chavez $1,000 per
month for 12 months for a total of $12,000. However, the IRS Form 990 for Denver Options for
2004/2005 shows no expenditure for "lobbying."

I am confused. Did Mr. Chavez lobby for Denver Options? If he did, why wasn't it indicated on
the IRS 990? If Mr. Chavez did not lobby for Denver Options, then why is Denver Options listed
on the official state records as a lobbying client?

Perhaps you can help to straighten this out. Thank you.

Page 26
QUESTION COMMENT
BY
AGENCY

Posted 2/13/2007

QUESTION TO THE ALLIANCE

We have
previously
awaiting
According to the web site of the Secretary of State of Colorado, A Mr. Gilbert Romero, arequested
Executive
(Registered Lobbyist and an employee of the Lobbying Firm of Capitol Success Group) and are
response
Director
Association
listed the Colorado Association of Community Centered Boards (CACCB) as his lobbying from
of the
Boards
Chris
client for one or more of the following bills in the 2004/2005 Fiscal Year: Colorado
Community
(DBA
Collins,
Centered
"The
Alliance")
The Secretary of State lobbying records indicated that the CACCB paid Mr.
Romero $2,500 per month for 12 months for a total of $30,000. However, the IRS Form
990 for 2004/2005 shows no expenditure to Mr. Romero for "lobbying" but instead shows
a $50,000 expenditure for "Consultant/legisla."

I am confused. Did Mr. Romero lobby for CACCB? If he did, why wasn't it indicated on
the IRS 990? If Mr. Romero did not lobby for CACCB, then why is CACCB listed on the
official state records as a lobbying client?

Perhaps you can help to straighten this out.

Also, the payment to Mr. Romero from CACCB was for $50,000. The indicated lobbying
payment in the Secretary of State's office by CACCB to Mr. Romero was $30,000. What
did Mr. Romero do for the additional $20,000?

I sent Mr. Romero an email at Capitol Success asking him to clarify his relationship with
CACCB, but have not yet been favored with a response.

Can you help clarify?

Thank you.
Posted 2/12/2007

QUESTION TO STEPHEN BLOCK, DENVER OPTIONS AND JOHN MEEKER,

DEVELOPMENTAL PATHWAYS

We
1. Dr. Block: requested
response
Could you please explain your salary in relation to that of a school superintendent? In the and are
1from
& 2)
Rocky Mountain region, the average salary of a school superintendent is waiting
Stephen
at
Meeker
for a
Block
$105,639.http://www.aasa.org/career/content.cfm?ItemNumber=2295 Denver
(Comment
Pathways. 2)
(Comments
Options
at
It seems to me that the duties of a superintendent of a small district are very similar to and
Developmental
John
those of the duties of a CCB Executive Director.

Even the salary of the superintendent of the largest district in the entire region (tens of
thousands of students, thousands of employees) is considerably less than yours.

Jefferson County Schools:

Total General Revenue 2004/2005 - $596,106,556 (There are other revenues from other
funding sources)

Superintendent's salary 2004/2005 - $167,247 + benefits not stated, but likely about 20%

Denver Options:

Total General Revenue $46,399,601

Executive Directors Salary $223,359 + $88,623 = $312,182

Page 27
Question to Denver Options, continued

How do you justify or explain this salary?

2. To whom it may concern,

I found the salary spreadsheet very interesting. I looked into what the President of the
United States makes a year and found out that as of Jan.2001 the president of the United
States makes an annual income of 400,000 plus 50,000 for expenses.The Vice President
of the United States receives an annual salary of 208,100.to take this further cabinet level
officials receive 180,100. Deputy secretaries of departments,secretaries of Military
departments and HEADS OF MAJOR AGENCIES receive 162,100.In looking at the
spreadsheet Stephen Block the executive director gets paid an annual salary of 223,559
with a benefits package of 88,623. My Question is how come a director of a C.C.B. makes
more than the Vice President of the United States or a member of the
presidents Cabinet when a huge majority of the funding comes from the government.To
me as far as Denver Options and Developmental Pathways are concerned I feel that
there is a big waste as far as salaries to upper management.It would be real interesting to
see what the benefits packages were. Especially for Stephen Block.He makes triple what
Mayor Hickenlooper makes!!The mayor is supposed to make 136,920.Mayor
Hickenlooper VOLUNTARILY took a 25% paycut so he makes 102,690.

Posted 2/2/2007

QUESTION FOR DEVELOPMENTAL PATHWAYS Note:

John
contacted
Meeker,
us to
item
"I've noticed my CCB (Dev. Pathways) keeps files that include material about my family ED of
advise
will
quite
that we did not submit to you for the file. These items also have nothing to do with Pathways
the
be in
busy.
services. By what authority do you keep such docier's? Who has access to our files? response
next
Thanks,
What is the protocol for parents going through the file and determining what is or is not to this
week.
John,
appropriate to have in the file? Couldn't your time be better spent serving us than He
keeping a file with unrelated material in it?" has
been
Posted 2/1/2007

We received shiny calendars in the mail from DP. We would be curious to learn what An email was
they cost DP and if that money could have been spent instead on services." sent to
Pathways
Developmental
on
comment.
January
No
received
28, 2007
comment
to date.
requesting
has been
Note:
John
contacted
Meeker,
us
be to
in
ED of
advise
next
Thanks,
Pathways
the
week.
John,
response
He
will
has
(Mr.
been
Meeker
quite
never
busy.
did
respond.