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Colorado Interim Committee on

CareLong-TermHealth Care and Support to

Persons with

Disabilities

Parents’ Views on the

Problem Potential & Solutions

July 3, 2007

IMPORTANT NOTICE No taxpayer, grant, or donated funds were used in the preparation and production of

here this report. was researched, Everything written and produced by concerned parent volunteers.

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Introduction

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

Interim urgently Committee needs to inform on Long-Term the Care Health Care and Support to Persons

referred with Disabilities to as “Interim (further Committee”) about our insights, ideas, concerns and

active, plans. These involved informed, 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,

issues our understanding at hand, and of to the present you with important ideas and concerns.

All parents in this group agree that while we want to provide you with this

the information committee as work, background we are to unsure about how to move forward with our ideas

resources because we or do information not have the at-hand to provide the committee with the proposal

along formats with you the have cost-benefit outlined, analysis you require for consideration. Therefore,

Committee our hope is will that consider the Interim these ideas and incorporate them into other proposals

providedhave the knowledgeby those whoand access to information that we do not have. We ask

these that you individuals connect us or with organizations, as you see fit.

Furthermore, parents in this group are unpaid individual advocates for our

complaining. children. We While are not we simply need to have our voices heard, we are doing all of this

at our own expense, taking

time from our jobs, businesses and care-provision duties etc., to advocate for

consider our children. this as Please you read on.

Our Stories

Attached you will find some representative biographies of some of our children

the and system our experience in Colorado. with We hope that you will read these before continuing

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

only their way adult to children, get the that programs the we need for our children is to either create our

and/or own programs to advocate and heavily systems for 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

activities children who they have do together, many access to higher education and jobs. Parents of

typical children are often able

to

children reasonably to move expect out their at 18-21 years old.

save for college for their children and for their own retirement. They can

Parents of children with disabilities rarely have any of the above. All of the

(and money don’t we have) have as goes parents to medical bills, paying others to help us with our

work children, to care and for staying them home because from we have no help. On top of this, we have to

the advocate school for system, our children and even in with our friends and family. It is a highly

one stressful, child. 24 College hour a savings day job for – for our other children don’t exist, either.

Parents have to learn everything about their child’s disability, everything about

laws the school related system to special and education 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 Parents’ Views on the Problem & Potential Solutions July 3, 2007

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School systems have limited funding from the feds and the state to address the

children special education like ours needs – therefore of many times special education supports are

duration extremely and limited frequency. in scope, Before Ref C, Colorado was 50

districts to provide special education services. Children with high needs nation such in as

represented some of the herein children are frequently pushed off to the side.

th

in the

the amount

of support

Some parents are told to “institutionalize” our children – when, in fact, given there to

even are no if longer we wanted institutions, to do that.

1

Our children with disabilities are frequently the victims of violence, abuse, and

marriages exploitation. suffer, Our and the divorce rate among parents of children with

80%. disabilities As with is thought all divorces, to be the around mother frequently becomes the sole provider without child support.

Parents are working with many different systems, many of which we don’t

deal understand. of our time We spend trying a to great find out where we are supposed to apply for

services,SSI and Medicaid,how to

navigateand onsystems,the fact that systems don’t work together – all the

children while trying and to hold care jobs. for There our is no place a parent can go, to get complete, one-

stopto utilizeinformationthe systemon howto meet the need of our sons or daughters.

Many of the parents in this group have formed organizations to support our

become children, active or have volunteers had to in other organizations serving our children’s specific

organizations disability. Some have of brought these substantial changes to the "system."

Recently, United Cerebral Palsy, in a report on inclusion, favorably

best commented in the country that Colorado in providing was 8 services outside of institutions. These "non-

direct institutional" result of services parent advocacy are a over many years.

We don’t tell you these things because we are complaining. We want you to

become understand angry, how tired, parents frustrated, and resentful of the systems that are in place

tooftenhelpcauseus –ussystemsmuch distressthat to provide.

When parents complain about the system, we are told such things as “getting

System services is from the the same DD as being on welfare – and people on welfare don’t get to

from complain.” a parent (A who true story was told this by her CCB case manager).

– the same systems that our own tax dollars help

th

Facts Although we are parents, we are informed parents. We know what the facts problem are related and to the 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, individuals 2006, on the there wait are list 3,746

younger children waiting for Family scores Support. of other families with

TABOR is a significant, if not impossible, barrier to obtaining new

Funding funding. options are limited and the current State budget cannot support

system increased in funding spite of to the the recent DD passage of referendum C.

The number of resources available to serve our children in FSSP, SLS,

.

However, we also know that there are

and “available Comp appropriation.” are limited to the

CCB’s are providing both eligibility/case management and direct services.

interest. This is a In clear states conflict generally of judged to have the best DD systems, direct

from services functions are usually like case insulated management and quality measurement.

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

Views on the Problem & Potential Solutions July 3, 2007 Page 4 There is vast disagreement
Views on the Problem & Potential Solutions July 3, 2007 Page 4 There is vast disagreement

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There is vast disagreement between many groups about whether or not Wait there list. should Some be a see state-wide different wait-lists as advantageous to some areas,

State when to in implement fact, the failure a fair, of objective the system to judge the level of services a

requires, specific person is the real with source DD of different wait-list times in different regions.

community This problems against pits community, parent against parent.

Mill Levies have been passed in several counties that were supposed to

However, address some our of CCB’s the wait tell us list. that State Budget cuts eliminated any gains

mill that were levies. made The from CCBs those used local mill levies to “backfill” loss of support

There from the is a State. severe lack of qualified service providers, housing options,

services jobs, daycare, to support and other the population. The primary factors in this are very

that low these pay scales, jobs are and the the lowest-ranking notion in the for-profit employment

Colorado system. ranks 48

- Coleman Institute, State disabilities. of the States (Attachment DD 2005), #2 as of 2004. (Note: the

been State combined of the States with list ranking has of tax burdens by State for easy reference).

decline There has in Colorado’s been a precipitous ranking in this area since 1977, when Colorado was

Colorado 23 will be ranked 49

th in per capita spending on services for people with

th or 50 th when the 2006 report is issued.

Rapid growth in certain areas of the State has been part of the cause of the Wait List. Outline of “the Problems”

rd . It is likely that

2

People waiting, but not just waiting – People on the Wait List are both

and adults may whose have parents no place have to go aged and young adults who need something productive

during to do with the their day. Nothing time happens while they are waiting except that their

careers, parents have finances, to rearrange resources, their living situations, etc., to accommodate an adult

care who or either who needs is an 24 adult hour who need supervision and support to connect with

community. friends and recreate Young adults in the are not building upon their K-12 education and can

inactivity. actually lose Parents skills can’t due to hold full time jobs and take their adult children to

appropriate engage in developmentally adult activities every day. What’s more is that many parents are

services unaware when of the their drop-off child in reaches adulthood, and therefore not prepared for it.

How the CCB’s work with us while we wait – While this varies from one

receive CCB to little another, in the families way of “case management” while they are waiting. Case

inform managers parents are not of prepared potential to programs outside of the CCB system. There may

amongst be extremely case high managers turnover – one parent reports five different CCB case managers

instance, during the one past of year. the parents For in this group was not informed of the availability

Allowance, of the Home by Care their CCB. Parents can look for services, and can find them, but

services cannot have unless those they pay out of pocket. Some programs charge $50 an hour,

disabilities just to take to adults outings with or to do volunteer work! Some families actually lose

manager their Family (which Support varies case among CCB’s) if they are using another waiver (and

Support therefore altogether) lose Family and are on the wait list for SLS or Comp Services.

Service providers won’t work with “tough cases” -- People who have wait actually list reached can’t get the service top of providers the to work for the allotted amount of funds.

responsible The CCB’s for say ensuring they are there not are service providers – their responsibility ends

eligible. at making Parents the adult are child unable to find quality care for $8 per hour. Parents of the

often more find severely that disabled day programs will not accommodate their children because the

to for-profit making world a profit, is oriented therefore they have a tendency to cherry-pick the people

least that they amount can of serve cost for to the maximize profit. Some other programs are oriented

approach. toward a “one Parents size of fits children all” with behavioral issues are also left out, because

providers for them either. are not prepared

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

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

needs Therefore, to work even Monday if a parent through Friday, they have no options for a program

and Friday would off. have to have every

There are no higher education options for people with developmental are disabilities community – Although colleges there that do have students with disabilities, there are no

certification degree programs programs or in higher ed that can support people with developmental

Remembering disabilities. that most parents have no “college fund,” students with

because disabilities you cannot must be get in financial a degree aid program to get it.

Many people with disabilities could be working, lessening the need for there immediate are no services programs – outside but the CCB system to support a person with a

a disability job other in than getting Voc and Rehab. keeping Voc Rehab is limited and can close cases when

work an individual with. Voc is too Rehab hard is to unable to provide on-going employment support to

maintainwithout supportsemploymentfrom, theand DD system, many are unable to maintain employment.

Waste in the system & how that appears to constituents – Parents continue

nowhere to wait for to services, turn when have their adult children sometimes become violent or when

beyond their physical the parents’ needs are capacity to care for them. Adult children (and often

level. parents) In are the living mean time, below parents poverty see that in FY 2004/2005 half of CCB

$100,000 directors are per earning year, with over two of them are earning over $200,000 & $300,000.

received Some CCB 10% Directors - 18% salary increases from FY 04/05 to 05/06 ($10-20,000).

receive People with SSI received disabilities a $20 who per month increase this year, by comparison.

(Attachments #3, #4) Additionally, highly paid assistant administrators and Financial Officers

What’s consume more, precious CCB’s resources. have formed other organizations to lobby legislators and

trade between organizations the CCB’s (CCB and the Partners and the Alliance) have spent $80,000 on

organizations lobbying. These had CCB budgets trade of over $750,000, with most of those critically

needed the CCBs. dollars also provided by

We also see the brand new buildings and purchases of extravagant offices by

parents some CCB’s. understand While wholeheartedly we that the salaries would not serve hundreds

understand of people – that, we want as consumers you to and taxpayers who are living in such terrible

why conditions, so much we money have to is wonder spent on salaries, overhead and lobbying for so many

taxpayers, CCB’s. We, have and the all right to ask this question. We also know that if a statewide

happen, referendum someone were to would be looking deeply into the waste in the system and ask

Executive the question, Directors “The get HOW much?” Yes, we know it is not the single most

extremely important issue, symbolic. but it We is simply must ask the question: is there a better way to

more deliver efficiently? 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

the families salaries as priceless. of CCB directors If were more appropriate, could even 1 or 2

save children a family in need from be hopelessness served and – isn’t it worthwhile?

We know that CCB’s are nonprofit organizations and their Boards of Directors

their determine directors the salaries – they are of not state offices, under state guidelines for

these compensation. monies are CCB’s not coming also state from that the Medicaid Waivers that pay for services.

funding But if that is available kind of private for overhead, is it not available for services?

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

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

Committee, meeting for we the and Interim others mentioned several times that there are parents who

retaliation have experienced from their CCB or Service Providers when they complain. These

forward individuals to provide will not testimony come for the committee. Attached you will find some

in information May, 2007, from that a offered survey such parents a way to communicate their problem.

We (Attachment parents who # 5) contributed to this paper face the same fears. However, we

communicate find ourselves our able issues to with you because you opened the door for a real

feel discussion we need on to the represent issue and everyone. we In some ways, we feel it is the

the responsibility courage to of come those forward who do to have tell you about those who are unable.

Other states are doing great things – We have difficulty, as parents, states understanding have been why able many to deliver other quality services in a timely manner while

understand Colorado cannot. that some We of do it has to do with money. However, some of it is also

made because this some a priority. states have Ultimately, the states which have made this a priority

values: have done a good so because society of makes moral sure that its’ most vulnerable citizens do not live theirsqualor.lives in danger and

Many other states have similar low tax burdens to Colorado, and yet are lists. providing We have services compared without many wait things to other states in developing this paper.

look The states at, such we as chose Massachusetts, to have similar tax burdens to Colorado overall.

income Taxes as in a Massachusetts percentage of were 9.8% whiled Colorado was 9.5%. In California,

it was 10.3%. Alabama,

which ranks 50

1 st in the State of the while States, Rhode is in Island, the top which 10 in ranks terms of tax burdens. (Attachment #2)

New Hampshire just passed a plan to eliminate the wait list in two to three

Community years. Brian Partners Collins from of Strafford County New Hampshire is a potential contact

what for information they are doing. about NH has 10 regions and about 300 people on the waiting list. No comprehensive, unbiased evaluation - Even though we know that

and Medicaid some conducts CCB’s claim evaluation, they conduct evaluation, there is no comprehensive

system. outside evaluation No evaluation of the of CCB what people who are on the wait list are doing. No

effectiveness evaluation of of the programs; actual nothing that clearly correlates the delivery of a

other service words, to actual evaluation results. is In conducted on an “output” rather than an “outcome”

stress basis. that Again, TREA we must requires evaluation, and that evaluation must be independent

service of case delivery management to mean and anything.

th

in the State of the States, also has the lowest tax burden

Furthermore, when surveys of parents are conducted, it is usually easy for the

the parent CCB. to be There identified is no real by 3rd party confidential system, in our own

respond experience. or they Parents provide simply only do glowing not reports so they will not make anyone mad.

People are dependent on the system because there are no other options.

working People who and can getting work health are not benefits. The system is set up to create dependency

would on it, even rather when not be parents dependent.

Lack of transparency means that problems are not addressed in the

formed system a – support A group group of parents called Pad-CO (Parents of Adults with Disabilities in

process Colorado) of and asking began CCB’s a for answers to questions posed by parents. While

many some CCB’s of the questions did respond, were left unanswered. (Attachment 7).

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

Views on the Problem & Potential Solutions July 3, 2007 Page 7 Potential Solutions Rep. Garcia
Views on the Problem & Potential Solutions July 3, 2007 Page 7 Potential Solutions Rep. Garcia

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Potential Solutions

Rep. Garcia has outlined an agenda for the Interim Committee to focus in

proposals certain areas. on ways He has to asked address for the named issues outlined in HJR 1043. The

are following outlined potential according solutions to those same subjects.

5

1. Introduction and Overview – What is the Problem?

We believe some of the problems are in the system, not only for those on the

receiving wait list, but services. also for We those have attached our personal stories as our written

those testimony who specifically are waiting addressing and those who are receiving service, as outlined in the

also agenda have for some meeting families one. represented We who have done everything for their

CCB children supports on their whatsoever own with – no who prove the ramifications of not having other

supports themselves. outside of

However, parents are not privy to a great deal of the information needed to

We explain often the don’t programs even know to you. what we are waiting for, let alone the intricate operationsMedicaid, etc.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

effective, determine efficient if it is the way most to provide cost- services. This has not ever been done,

• Adjust to our knowledge. the salaries of CCB executives to be more in line with State salary

salaries scales; and for similar in line with work in the other states we have looked at (California,

Minnesota). Massachusetts, (Attachment and #4)

Allow parents to opt-out of the CCB system and use a different type of

with payment a type system, of cash/card possibly or voucher system to pay for services we need in

Mexico’s a fashion “Mi similar Via” to system. New Some parents would like to receive funds

form allocated so that in IP's a consumer in "debit or card" family can also contract directly with

providers approved. who are Medicaid

Develop a method of unbiased, outside evaluation that measures

correlates outcomes, the not provision outputs, that of a directly service with a measurable result; provide

when penalties they for do service not meet providers target metrics, and when complaints against them

There are judged must to be have an independent merit. “feedback loop” within the system to force

must the desired be linkages results. between There DD services and key state departments, e.g. the

detection Health Dept., and correction to assist in of problems.

Write civil rights for people with disabilities into Colorado law, as has

Act been in done California. with the The Lanterman desired principle is this: people with developmental

right disabilities to the must services have and the supports they need, such that they, and their

similar families, to can people live who lives do that not are have disability in their families;

Review the organization of the delivery system in Colorado. A possible

consideration. proposal is attached (Attachment for your #6 )

Mandate that CCB's provide online training for their provider certification.

and This time is much efficient more and cost could lead to more people willing to become

certified.

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

Views on the Problem & Potential Solutions July 3, 2007 Page 8 3. Innovation We present
Views on the Problem & Potential Solutions July 3, 2007 Page 8 3. Innovation We present

Page 8

3. Innovation

We present the following ideas under the innovation category, from the

perspective categories: of parents, in these

Education: Transitions, Higher & Continuing Education There are many people who could be taken off of the wait list if they had

could access obtain to higher degrees education and certificates and that would lead to more success in the

workplace them. Some and ideas jobs are: to support

Develop a degree program in the community college system for people

the with Venture disabilities degree modeled program after of Bellevue Community College in

Create a student loan program for people with disabilities so they can

without afford to the get need more to education, be in a degree program.

6

Provide more support for the Transitions programs in the education system

adults to help can ensure get jobs that young and transition into work life to lessen their dependence

Create on the system. a grants program for other nonprofit organizations that could

provide adults with more disabilities. education for

Employment

Identify State, City, and County employment opportunities that could be

people transformed with Developmental into jobs for Disabilities. Provide training for supervisors in

so these they government can support offices people with DD in the workplace. Publicize these

the jobs. School Work to with Work Voc Alliance Rehab, Program, and others to fill them.

Convene business leaders through the Chambers of Commerce to come up more with a jobs plan for to people provide with DD in the workforce, and an incentive to do it.

Case Management

Provide true case management without a built in conflict of interest that

available evaluates (both all resources through the CCB system and outside of the system) to a

resources family and and coordinates distributes those information on those resources to the families.

Develop an objective, unbiased system within this State which can with realistically DD as classify to their level each person of need. Until this is done, resources cannot be

allocatedState. If thefairlySISacross(Supportsthe Intensity Scale, currently being implemented

will by the not state work, DDD) consult system other states with highly-regarded DD systems to

Mandate find out how "cart/checkout" they did it. features on CCB websites so that

providers families/consumers and direct can their directly own programs. access This would eliminate the need

management. for many man The hours money of case saved in case management hours could be

and redirected providing into service direct services to wait listed persons.

Mandate lists of providers, their services, the programs they are available

their for (SLS, HOURLY FSSP,etc.) FEE on and CCB websites. There is too much secrecy about

and how the much benefits providers they are receive. paid

Other

Offer a tax credit for providing housing for a disabled family member or

that some would property increase tax relief, families’ etc. incomes (to apply to our children’s needs) without raising taxes.

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 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 support wait list themselves that could actually with a little assistance, reducing wasteful spending, and more areas. funding from different

7

Our ideas in this area are to:

Somehow tie new funding to growth through fees to developers or a head

the tax for state, people purchasing moving a into home here for the first time, or any other means to

Evaluate tie a fee to those growth. who are waiting and provide other options to those who

Case could managers be working need at this to offer time. families resources.

State-wide referendum

What We Want Most

Every parent will give you a different answer to the question: What do you

alone, want most? parents In have 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

penalize who are the able applicant and don’t when they do need services.

True case management, separated from whoever does the delivery system,

Eliminate with parent the rights. wait lists.

Reliability in the service delivery system, so that parents can actually go

and to their not jobs have and to be do constantly them, leaving work.

The bottom line is the same, however. We want our children’s lives to match

the closely lives as of possible. typical kids as

Our constraints & challenge

As we said earlier in this paper, we do not know as parents how else to present

we you are with not these paid ideas, to do as this work, nor do we have access to what it currently

impact costs or the how financial our ideas picture. would We have to rely on you, our representatives, to

ideas help us into by your incorporating thinking and our potential legislation that comes from this committee.

Interim Committee on Long-Term Care Health Care and Support to Persons with Disabilities 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 any one about, of us. please contact

Denver C. Fox, Ed.D.

303-773-3890

Parker, CO

Renée Beauregard

303-766-2050

Renee Walbert

303-328-7230

Denver, CO

Lynda Brandt

303-604-2726

Lafayette, CO

Gerrie Frohne

303-986-0482

Sheryle

303-364- Hutter

3840

Aurora, CO

Ed Arnold

303-442-2133

Boulder, CO

Liz Wuest

303-904-0117

Littleton, CO

Sam Towers

970-554-

1886

Otis, CO

Sherri & Bob

303-671- Martin

2595

Aurora, CO

Susan Luff

719-573-8690

Colorado Springs, CO betzenv@aol.com

Verlene

719-532- Betzen

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

tax burdens

3.

4. Comparative salaries of similar agencies in other states, and other

administrators

5.

6. Proposal for Reorganization of the DDD system

7. Pad-CO Hotline questions and responses (or lack of them)

Analysis of CCB Director Salaries

Retaliation Survey Results – and selected stories

Sonja

Aurora, Davis

CO

Diane

Pueblo, Winkley

CO

Dawn

Hunter

303-

794-

Littleton,

CO 2133

8

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

Views on the Problem & Potential Solutions July 3, 2007 Page 11 Representative Biographies of Some
Views on the Problem & Potential Solutions July 3, 2007 Page 11 Representative Biographies of Some

Page 11

Representative Biographies of Some of Our Children

Kyle – age 25 in August

Wait List Status: Receiving Family Support,

on Services Wait List for SLS & Comp

Years on Wait List: 5 CCB: Developmental Pathways

Attachment

# 1

Kyle has a rare genetic disorder that carries with

disabling it a long list conditions of co-existing and medical problems. Some

include of his other ADD, diagnoses PDD, Sensory Integration

Speech and Language Problems, Dysfunction, Mental Health Learning issues, Disabilities, Oppositional Defiance

Executive and behavioral Functioning/Cognitive problems, Impairment, plus a host of medical problems related to his condition.

Kyle is a “high functioning” young man in some ways, who achieved 4

after being in special ed classes during his time in school. And yet, Kyle has

and so many short-term cognitive memory issues problems that he is often unable to perform tasks

time, within as a demanded reasonable by period the workplace. of In school, Kyle was bounced from one

another. school and In the program end, he to had to be placed in off-campus programs for kids with

behavioral/emotional severe problems.

th grade

level

in

math

and

reading

9

Kyle has held several jobs, but has been fired from all of them. He has had job

through coaches the in every Transitions instance program and the School to Work Alliance. One of his

because employers of even something fired him his job coach said about him! Kyle has received services

Rehabilitation, from Vocational where he was placed in a work adjustment program to work on

workplace. his behavior That in the program dismissed him because of his behavior. Kyle has not

and worked has since received that no time help until recently.

Throughout the years Kyle has lived at home since he became an adult, he has hadmentioned.no servicesTherefore,but thosehe spent his days in his room playing with toys and Yu-

TV. Gi-Oh He cards had no and friends watching and no social life other than Special Olympics twice a

year.startedHisa businessmother hadyears before so she could at least be at home with him

increasingly during the day. depressed Kyle became and frustrated with his life and started taking it out on

hisdivorcedparents.dueKyle’sto tremendousparents

stress and strain.

Kyle’s parent’s moved him into an apartment that costs him 68% of his SSI

disability check. Because isn’t as Kyle’s obvious as for other people, Kyle’s parents made the

Kyle decision would to learn able whether to live outside or not of a group home situation so they could plan

so for difficult his future. to live Since with, Kyle they is decided he should live alone. Kyle has really

daily needed living SLS skills to help for him independence with but SLS is not available to him. His

making parents feared progress if Kyle toward was having not his own life, the belligerence and enormous

home behavior would issues continue he had to at escalate.

Kyle is starting to work with Voc Rehab again recently because of the Social

Program. Security Ticket His dream to Work is to go to college. His mom is crossing her fingers.

Family Support ($200 per month) has paid for Kyle’s tremendously large

insurance) dental bills and (after therapy dental with a counselor to help him cope with having a

mother disability. receives Other no than information this, Kyle’s or support for him from her CCB.

At one point, Kyle’s mother sent a desperate e-mail to her case manager after

difficult Kyle had to become manage extremely in the home which read:

Kyle had to become manage extremely in the home which read: Page 12 Kyle…continued “I'm writing
Kyle had to become manage extremely in the home which read: Page 12 Kyle…continued “I'm writing

Page 12

Kyle…continued

“I'm writing to ask you if you can give me some information about what

available housing options for Kyle MAY once be he gets his SSI and we reach the top of the waiting

hope. list. I need Life with some him small is so bit very of difficult.”

Her response was:

“The adult service waitlist is a statewide resource which means the list does

currently not move enrolling that fast. kids We are with the eligibility date of fall of 2001 for Supportive

eligibility Living Service. date is Kyle May of 2002. That does not provide out of home placement.

service The comprehensive waitlist is very very long, which provides out of home placement. SSI

toward will give housing you more if you funding are a looking for Kyle to be out of home, but at this

of time the DP adult has programs no slots in that either would be funded by the state. If Kyle would be out

pay of home for that you out would of his have SSI to or 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

left others their before jobs her at the who CCB have because they spent their days not being able to

accept provide that any there hope can’t – she be doesn’t a better way.

The sad part of all of this is if Kyle does need a placement because he is not

place, successful the case living manager’s in his own suggestion will not even work. SSI would not cover

placement the cost of and out his of home parents do not have money to pay for it. Kyle’s parents are

happen. very worried Without that Supported 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

Years comp on Wait List: 9 (since age 14) CCB: Imagine

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

pediatricians fashioned girl" because by some she has quadriplegic athetoid

components. cerebral palsy This with was spastic a more typical disability

palsy prior to was about caused 1975. by Her exceptionally cerebral deep and

lengthy time of birth. asphyxia that occurred at

Jodi's primary diagnoses are quadriplegic cerebral palsy and legal blindness.

Thein adulthood,pattern ofleddamageto onehas,incompletely-formed hip and shortened leg on that

these side. Functionally, deficits: she cannot Jodi has stand, sit-up, crawl, feed herself, toilet herself, or

objects while she is side-lying. Jodi is non-

pickexceptingup andlarge,holdeasily-graspedany object

physical verbal. Because deficits, of Jodi her requires 24-hour total care.

Nonetheless, Jodi's zest for life is obvious, and one might even say, happy contagious. person She for is whom an exceptionally the extent of her disability does not seem to matter.

behavioral Because she issues, has no other than a very obvious reaction to music she interprets as

care sad, those for her who regard provide it as a positive experience. However, the physical aspects

majority of her care of are her difficult care providers, for a due to the necessity to lift her between bed,

couch, shower wheel-chair, chair, and van. stroller,

bed, couch, shower wheel-chair, chair, and van. stroller, Page 13 Jodi continued Jodi's parents were able
bed, couch, shower wheel-chair, chair, and van. stroller, Page 13 Jodi continued Jodi's parents were able

Page 13

Jodi continued

Jodi's parents were able to maintain her weight via hand-feeding for 21 years.

constraints However the this severe caused time created problems within the family. When Jodi left

services school at of age her 21 para-educator and the were lost, Jodi dropped down to 63 pounds. The

have parents a g-tube made a (Mickey decision button) to implanted in 2006, which eventually brought

pounds, her weight and back made up the 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

half- plans or to full-time. re-enter work Jodi's either dad has maintained a near full-time work schedule,

evenings helping to and provide weekends. care Jodi's mom has converted her work to occasional

weekends, subbing jobs when at libraries dad or other on care providers are available.

Jodi's parents are quite concerned about the obvious downturn in services to

Colorado the DD population over the past in 15 years. Jodi's mom has an unstable shoulder and

otherproblemsskeletalrelatedandtomuscular23 years of lifting. Jodi's dad has had a 15-year stress-

thyroid related illness failure that and led neurological to disorders. Both parents are concerned that the

in downturn Colorado in means DD services that the comprehensive services that Jodi will require will

after not be they available have become until long 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

CCB: Comp Developmental Services: about Pathways 10

Andy has been diagnosed with “pervasive “Cerebral Palsy,” developmental “brain injury,” disability,”

disabled,” “seizure disorder,” “hyperactivity,” “profoundly “perceptual

challenged” disorder,” “behaviorally and a variety of other

hospitalized numerous times, including a labels. near-death As a child, experience Andy with was

epilepticus). continuous seizures In 1998, (status Andy fell out of bed and was paralyzed from the waist

aggravated down (the injury by severe was osteoporosis). After 3 months in Craig Hospital, his

in family intensive and others rehabilitation spent 2 with years Andy so he could regain use of his legs.

Andy currently lives in a “host home” with a loving caretaker. Prior to the

parents, “host home” Denver he (now lived with 67) and his Nora (now 69). He has a brother, Tim, who, in

the 1986, shoulders was paralyzed down in from a sporting accident. Tim, still totally paralyzed, is now a

attorney, well known having civil graduated rights from Stanford Law School, and has a law practice

with attorney, his wife, Amy and Robertson. fellow

Prior to the “host home” Andy lived at home until his early thirties. For almost

allparentsof thosehad years,absolutelyhis

activities. church, recreational It was only or near social the end of those years that some family respite was providedinstituted through“family newlysupport” funding.

no respite nor opportunity to be alone, to engage in

During his early school years, Andy was not allowed in the public school 13 system. hour We per day, set up seven an intensive days per week home therapy and educational program

over using six over years, 350 until volunteers PL 94-142 passed, requiring the public schools to provide

profound services to disabilities. those with

Page 14

Andy…continued

Andy’s day program has been problematic since the program his parents ran

Rocky for him Mountain and others, Job the Opportunity Brigade, had to close in about 1999. This

father, program, served designed Andy by and his 16 other individuals with profound disabilities and

in marked a real behavioral community challenges work environment. At that time, the DDD system allowed

with no more profound funding disabilities for those than those with minor disabilities, and despite

adequately extensive fund financially raising, supported it was not by the “system” and had to close.

Over the years we have had continuous and never-ending meetings with the staff CCB to “case have managers” a day program and developed to meet his needs. We were told by

Andy Developmental had five different Pathways case that managers this past year. Sometimes, we don’t

weeks even know ago we their requested names. Five a funding increase from DDD to better provide for his

seems needs. lost That in request the bureaucracy. now 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 parentsprogramtotofindmeetanAndy’sadequateneeds. At times, his caretaker must come and get him

because from the of current behavioral program, challenges. We (his parents) are always on pins and

needles phone call. awaiting that “next”

We look at the future with dread. We will die before too long, and there is no

support adequate and system advocacy to provide for Andy. We have made his brother the co-guardian,

have but it to is assume a shame this for responsibility. Tim to Andy has no relatives who have the

slightest welfare. interest in him and his

Aaron, age 20

Currently on the wait list for SLS & Comp

Years Services on Wait List: 6

Aaron is on the Wait List for both the SLS and

wait Comp list waivers. right away He went at age on 14. the He is now 20

Once years a old. year we get a visit from a case manager

he at our is on CCB, the Wait and we List see (if where I can believe those

for numbers) Family and Support we are for able a little to apply assistance in the

paying meantime. for But camp other last than year help (camps for kids with

expensive than your local scout disabilities or church being camp!) way we more haven’t accessed it much.

programs All of the that services Aaron and has accessed, we found on our own and in fact, often

case have managers served as over resources the years to the letting them know about things available to

Aaron families. already lives on his own through the EBD waiver (he has physical and

cognitive) medical needs and in we addition use the to CDAS model (which means we hire, train and

He manage wouldn’t our own actually attendants). be able to use an SLS slot the way they are traditionally

needs funded would (his home cost more care than those waivers usually supply) and you can’t access

time. two waivers So right at now, the same we give up the community support that SLS would have

home provided care in we order need to under use the EBD.

A comp waiver would address all that, but I’m confused about how that would

group look. If home, he went he would to a have enough money allotted in his waiver, in theory, to

support. pay his food, And all lodging, his SSI and money, except for a small personal allowance each

pizza month and (enough some to shampoo) buy one would go to whoever was the provider.

But he has a section 8 housing voucher and uses it to pay for his apartment,

SSI and then to pay uses his the cable, rest phone of his and electric bills as well as groceries. But he has

under more left the over comp than waiver he would to pay for pizzas, coffee shops and movies. If he got a

give comp up waiver, his section would 8? he Or would he keep it and stay in his apartment, but then 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 systempaying lessand thanMedicaidif he woulddidn’t behave a Section 8 voucher?

And if those vouchers help shift costs in the system, are we advocating at the

increase federal/state the number level to of vouchers available to folks with DD? Aaron wants to

live a group in his home own or place, a host not home. in

Anyway, it’s just a flat out confusing system. If Aaron didn’t have us to

suddenly advocate for out him, of the and picture, if we if were the state were to come in and assume

entity) guardianship they would (or give place it to him some in a other nursing home. And because nursing homes

aredifferentfundedMedicaidunder yetfundinga

cognitive for him. Yet disabilities, even with with his a lot of support, he’s able to live on his own—but

onlyEBDbecausewaiver. heAndgotitsthatcost is less than if he were in a nursing home. Frankly, a

appropriate nursing home option is never anyway. an So if there is money for a nursing home waiver,

whywhichnotcostsfor lessa compand waiverencourages him to be a valued member of his

Aaron community? lives in Congress Park, and the merchants and neighbors he has met

value this last him. year Everyone know him calls and him 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

voucher voucher was and getting a miracle that unto itself.

Aaron has a girlfriend who also has developmental disabilities, she lives in

would Colorado like Springs to get married and they some day. We won’t even go into how complicated

community trying to move to another from one is!

Does Jane Q citizen even know the difference between an EBD waiver and Probably one of the not DD and 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

manage get from his Aaron, money, helping pay his him bills, assist him in making good health decisions

overwhelm etc. would probably anyone, especially anyone who has no background what so ever.

out We’ve as best had as to we try can. to figure Some it days I think we have a handle on it, but then I get

wrong sick or and something it can all goes come crashing down around us like a card house. I have

income given up over much the in years the way because of I’ve had to work from home and be flexible in

order needs. to meet the kid’s

mechanism, there would be those funds available

Deidra, age 17 (Aaron’s sister)

Deidra, our 17 year old, also has and medical is a and little developmental person and legally issues

wait blind list besides. at age She 14. too I expect went on that the her

SLS needs waiver. could be But met I can’t through even the see the

end her and of the the tunnel wait list. in terms of

She too would like to get married

supports some day; in I place hope by she then has because more

it’s with complicated a disability! having a spouse

"Alan" (Pseudonym) - age 36

Wait List Status: Receiving DDD Comprehensive

Services Years on since Wait 8/03 List: 18 (from age 14, when 1st

eligible CCB: Developmental for "The List" Disabilities Resource Center

(DDRC), Photograph: in Alan Jeffco preferred that his photo not be used

Alan has lived in CO since age 7. He attended a segregated school for children

16, with when disabilities we were until able age to extricate him (against school district desires) to a typical Jeffco high school,

Page 16

Alan…continued

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

Before graduation, with the help of excellent physical and occupational jobs: therapists, one was he began rubber 2 stamping part-time library 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;

for he continues his 4th dry to cleaners do this job, owner. These jobs are possible with the help of very

technology. creative, state-of-the Alan is not art able to move any body parts except his eyes, his head

(less a switch), than an and inch recently to access an inch to access a switch with his hands through

(True dedicated 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

veryanotherunfortunateyoung man),deathheofand I were living in our family home, two siblings

on. having I had grown had a up heart and attack moved and was very stressed caring for Alan's daily needs

andweekworkingon graveyard20 hoursshiftsperbecause Alan's nighttime care was cheaper than his

hygiene, daytime care his work (feeding, and recreation). His care is 84 hours out of a possible 168

the hours caregiver's in a week sleep, (then paid add employment, in getting groceries, and an occasional

how shower!) difficult I did this 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 his wife moved

into our family home to provide 24/7/365 services. R became his own agency,

pay so that 15-30% he did to not a provider have to agency between himself and the CCB. Alan wanted

to have the same caregiver

during days and nights because Alan is non-verbal, has an eye-gaze

"miscommunication" communication system between and feared caregivers. R is the total care provider, but his

grandchildren wife, grown daughters now round and out Alan's "family". Alan's provider receives $90,000

in taxpayer dollars for

the care that 4 nurses would have to provide, if R was not willing to do this

very stressful, physical work. Due to Colorado DDD rules, a family member (myself) cannot live at the receiving same address DD as Comprehensive someone Services. So I must unnecessarily spend $7000

while for apartment an "apartment-like" expenses, master bedroom/bath go unused at Alan's house (our

THIS former IS family JUST home). PLAIN STUPID POLICY and needs to be changed! The $7000

wheelchair would go toward accessible future vans, or major house upkeep (roof, etc.).

No living arrangement is perfect, and Alan has experienced some recent health

can concerns. believe As that a mother, "pneumonia, I pressure sores, possible conversion to Gtube

feeding" I were still would caring not for be Alan. issues However, if at 67 and unhealthy, my returning to full

unrealistic-and time care giving short is term. But Alan's quality of life (Bible study and church,

Dynavox playing church communication music on a device, loving his jobs, cheering on candidates,

Rockies attending games, Broncos, and Nuggets enjoying and social events with his siblings and their children)

is good. Let's hope it

remains that way after I'm dead.

Ron -- age 40 CCB Services – Never applied or received and services has had as he a job. has lived at home Don Jr., Age 43 CCB Services – Although fully disabled and for unable services to work, because does his not disabilities qualify do not

include a developmental disability. Ron suffered a lack of oxygen during childbirth and was deemed Upon developmentally evaluation disabled at age 4 from we were birth. instructed by Children’s Hospital that Ron

hold would a never job and read, that write, we should or institutionalize him. We refused to believe that

not this succeed beautiful and child sought would out the best public education opportunities to maximize his abilities, we spent

education opportunities to maximize his abilities, we spent Page 17 Ron & Don continued…. thousands of
education opportunities to maximize his abilities, we spent Page 17 Ron & Don continued…. thousands of

Page 17

Ron & Don continued….

thousands of hours working with him at home to support the education that he his was success. receiving We and are promote so much more fortunate than so many in similar situations

grade as Ron level, can read he is at a a whiz 4 with the computer, and he has a job that he has been

Education at for 17 years Bus Assistant), (Special and he is an asset in the community. All of us are

functioning so fortunate and that able Ron to is be high relatively independent.

th

Ron received SSI and Medicaid for a short period of time during his teenage

from years mom, but with dad, a lot and of devoted help teachers during high school he was able to get a

out job of that the allowed system. us We to get never applied for other services as we knew how

manyservicespeoplewith weremuchwaitinggreaterforneed 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 disabilities physical and which neurological are fully disabling. Don,Jr’s issues did not surface until he

wasapplied27 yearsfor SSDI,old. HeSSI, and Medicaid and finally after 6 years of appealing denial assistance after from denial Julie and Reisken with at Colorado Cross Disability Coalition he was finallyMedicaid.approved for SSI and

In addition to serious disability, Don Jr. is surviving a bitter divorce that has

worse. made his He medical attempts issues to maintain even independence and with a lot of help and

been communication able to remain with fairly friends independent, has still living in a rural community on the

CCB western services slope. would Although be such a big help to Don Jr. as he strives for

for independence, CCB services he as doesn’t he is not qualify developmentally disabled. We provide a home

system, for him, he unassisted receives by Medicaid, the Food Stamps of $139 a month and SSI of $443

even per month cover which his utilities, doesn’t over the counter medication, or gasoline to provide

pharmacy. transport to Don doctors Jr. wants and the 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 our about two what vulnerable will happen sons to should something happen to us. We are so much more

other fortunate individuals than so and many families that our son’s remain relatively independent,

without however our feel assistance 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, reach obligation the age ends of when 21 or children become independent (financially and socially) however

it when is a disability lifetime obligation is an issue, of caring for, advocating, and protecting not only

their ultimately vulnerability their life. but

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

road for every to eligibility single benefit. is rough, The but even when eligibility has been determined the

resources road to services is full and of chuckholes, wrong turns, and one way streets. This must be

system changed but to mostly improve to the 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

Years for comp on wait list: 5 (since age 14)

CCB: Imagine

Chris is a delightful, smart young man who has difficulties, autism, sensory ADHD issues, & encopresis. speech He has some very

does good very skills well. and He with is support an only child of his divorced Mom.

Page 18

Chris…continued

He was diagnosed with ADHD in kindergarten, then PDD-NOS, then diagnosed Aspergers with and at Autism. age 11 His was Mom started her own accounting business when

have Chris the was flexibility 8 yrs in order to be to able to take Chris to the numerous therapies and

go doctor to the appointments school when as called 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

Mom program thought through that BVSD. once Chris His graduated her life would be easier. To her

the amazement support she Chris found needs that to giving succeed took much more time. She estimates that

per she week spends keeping at least Chris 20 hours on track and successful.

Because of the hard work of Chris’ Mom he works part time at the County

at Assessor’s a local stables. office and He also part does time some volunteer side walking. He took

years therapeutic and became riding lessons a very good for 10 rider and has rode in competitions. His passion

ishorses.to workIn orderoutdoorsfor Chriswith

She work had she to bought decide him between a car. being a full-time chauffeur and support person,

whichor buy washim outa car.of Histhe questioninsurance alone costs as much as he makes at the

young County people Assessor he is yet still unlike unable typical to work full-time to pay for this. Without his

to car the he stables, would be which unable is not to get on a bus route.

to get to all of his activities and allow his Mom to

Chris is generally a happy guy but has his moments of depression due to lack

activities. of friends, He direction would and like to live on his own but is unable to because of

supports finances and are unavailable. the necessary His Mom keeps him as busy as she can but it is not

Emergency enough. He SLS recently services got because his Mom was having a tough time working and helping Chris.

Chris’ future is very bright given the right support system. It is conceivable

become that he could an active at some community time member and work full-time.

Page 19

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

Attachment

2

Page 20

Attachment

3

Page 21

Comparative Salaries for Positions Similar to that of the Executive Director of

a Community Centered Board in Colorado

Every state has a different system. Not all states contract with nonprofit organizations, therefore possible to it obtain is not IRS 990’s. Therefore, we contacted some states:

Attachment

4

Minnesota (tot. state pop. 5,167,101): Salaries in MN for regional DHS positions are in

to the $80,000 $60,000 range plus benefits. Benefits are typically $5,000 additional annually.”

Massachusetts (tot. state pop. 2006 est. 6,437,193): “There are four Regional Directors with

Regional an average Director salary of $100,000 and additional benefits of 30%. The four RD’s manage 18 Offices Area Statewide.”

From California

California has 21 Regional Centers. These centers provide the same services as Colorado

following CCB’s. The sampling of salaries and numbers of clients served (where reported) are taken from most IRS 990’s recent listed on Guidestar except where noted. (Note: California’s cost of living is

higher significantly 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

duplicating responsibilities those almost of a superintendent of schools.

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

typical $167,247 state plus and county benefits, managing a budget over $550,000,000.00 and thousands of

and children 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

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

Page 22

 

Attachment

COMMENTS FROM A RECENT RETALIATION SURVEY OF PARENTS OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES

5

Question asked: Please tell us about your fear of retaliation. Why do you have fear? this Does it stop you from complaining or taking action in any way?

Comment Text

1. Whenever I question the services or why they won't provide what is requested, my

case son's manager gets in trouble as does the provider. The administration seems so

intolerant of a parent questioning their decisions or lack of services and they blame the 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

options because Colorado medicaid is horrific. Hell, half the time it takes weeks to

find even out who is in charge to complain to. Even stated to me "You better quit biting the

hand that feeds you."

3. I've had the experience of asking for more SLS funding for my adult child and getting

response a that left me feeling that calling attention has prolonged the stay on the waiing

list for comprehensive services.

4. With regularity, parents are told that to remain "in service" their child must x,y,or z, fill

the in blank." We hear this as "the funding will be cut if you do not x,y,or z." What I have

come to understand is that this phrase means something altogether different. It means, 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

doing actually 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

contractual the 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

any abuse or neglect she encountered by the school or the agencies. The only way we would be aware of retaliation would be if someone from the agency/school made a 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 my work that reflects negatively on the CCB. It's like they are keeping score and if you

get too many tick marks against you, then all of a sudden the "funding" has been cut

they and 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

up kiss to them and say glowing things until they get screwed and then they lose funding

too.

Response

Wed,

Date

9:21 5/30/07

AM

Tue,

7:30 5/15/07

AM

Mon,

9:34 5/14/07

AM

Tue,

5:39 5/8/07

PM

Tue,

5:32 5/8/07

PM

Tue,

10:26 5/8/07

AM

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.

8. I do not have fear of retaliation, I have fact of retaliation. It does not stop me from

my doing job and advocating for individuals in services including my son. However, the fact

that they targeted my son and breached confidentiality resulted in no more than a letter

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 adequacy of services. However, the survey goes right back to the CCB, and the questions, in my case, totally identify who is completing the survey. I never answer 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.

So, the survey, in my case, never accomplishes its purposes. Page 23 Retaliation Survey continued… 10.
So, the survey, in my case, never accomplishes its purposes. Page 23 Retaliation Survey continued… 10.

Page 23

Retaliation Survey continued…

10. I am trying to choice to another disctrict. I am worried that if they know I have a complaint in they wont take my son.

11. I hsve this fear because after being in the system for 15 years, I know that if I persue

what my daughter needs, and the school can't/won't provide it, then the staff won't be nice as to her; they'll start to put her in the middle of the disagreement; the bonding falls 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 worse. I should have taken it up the chain of command but worried what would happen to my child if nothing was done?

13. When I am talking about the services my child recieves, or lack of services, and ask people about it, ie teachers, transition team, other parents, I am told to be very careful about complaining, who to talk to, etc. This CCB has been apparently known for 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 by the director's of CCB's unchecked by the state. I have been personnally arrested and charged with trespass by a CCB director as a result of my activism. In the past when I 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

16. It definitely stops us from standing up for what we believe should be happening for our children. I have no doubt about that. During school years we were afraid that if we

"made the teachers mad" they would take it out somehow on our daughter. Now that 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 have history and knowledge to tell me the only way to make change happen is to keep

chipping away at a problem.

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

19. I am always aware that what I say and to whom I say it may cause negative

consequences for my child with a disability. This has been true throughout his

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and schooling especially in the adult CCB delivery system. Supervisors and others do not like people with suggestions and ideas.

20.

YES! retaliation is rampant within the system, the two cases that I have shared are indicative and these are only a couple, I know of many individuals who have been

retaliated against by providers and the system. It does stop consumers and families from filing complaints because it causes harm to the recepient.

22.

it will not stop me

Page 24

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Attachment

6

Reorganization of the Colorado Service Delivery System

* Convert the CCB's 501(c)(3)'s into line/staff direct service agencies

(centers) to the state. reportable

* 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

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

* Start the process of eliminating many of the financial functions of the not CCB be necessary which would with the combined state processes.

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

"center" associated to with receive each grants new and other donations for the new organization.

* Set up an Advisory Council of parents and individuals with disabilities center. for each new

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

majority composed of of parents 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 would list. be There portability between service areas. Once at the top of the

wherever wait list, then someone the center lives would be responsible for finding or

developing placement. an appropriate

* Independent service providers would continue to be contracted

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

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

function converting into that a separate service agency, either for-profit or non-profit, to contract center. with the new

The new center would be the Single Entry Point, and provide case management.

be the Single Entry Point, and provide case management. Page 25 Attachment 7 SELECTED QUESTIONS AND
be the Single Entry Point, and provide case management. Page 25 Attachment 7 SELECTED QUESTIONS AND

Page 25

Attachment

7

SELECTED QUESTIONS AND RESPONSES FROM THE PADCO HOTLINE.

CITIZENS AND CONSUMERS ANONYMOUSLY REQUESTED

DIRECTORS RESPONSES AND FROM ADMINISTRATORS. THE QUESTIONS WERE

THE SENT ADMINISTRATORS DIRECTLY TO FOR THEIR REPONSE. ANY

RESPONSES WERE POSTED ON

THE WEB

QUESTION

COMMENT

BY

Posted 2/23/2007

QUESTION TO CCB PARTNERS

During Fiscal Year 2005-2006, the official online records of the Secretary of State of Colorado indicate that a registered lobbyist, Mr. Bill Hanna, received payments from CCB Partners in the amount of $14,000.

However, on the IRS 990 filed by CCB Partners for the 2005-2006 Fiscal Year, in response to the question on the form on Schedule "A" Part III Line 1

AGENCY

We have

previously

awaiting

requested

a

Executive

and are

response

Director

of from CCB

Partners. Cami

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

QUESTION TO DENVER OPTIONS

Thank

you differences for

pointing

activities.

out the

We have

reporting

information

of

forwarded

on their to our

in the

According to the web site of the Secretary of State of Colorado, a Mr. Nolbert Chavez, (Registered Lobbyist and an employee of the Lobbying Firm of Capitol Success Group) listed Denver Options as his lobbying client for one or more of the following bills in the 2004/2005 Fiscal Year:

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."

lobbying the

review

office for

and

Joan

resolution.

Marwitz

Director,

Denver

Options

Auditor's

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.

Perhaps you can help to straighten this out. Thank you. Page 26 QUESTION Posted 2/13/2007 QUESTION
Perhaps you can help to straighten this out. Thank you. Page 26 QUESTION Posted 2/13/2007 QUESTION

Page 26

QUESTION

Posted 2/13/2007

QUESTION TO THE ALLIANCE

According to the web site of the Secretary of State of Colorado, A Mr. Gilbert Romero, (Registered Lobbyist and an employee of the Lobbying Firm of Capitol Success Group) listed the Colorado Association of Community Centered Boards (CACCB) as his lobbying client for one or more of the following bills in the 2004/2005 Fiscal Year:

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."

COMMENT

BY

AGENCY

We have

previously

awaiting

requested

a

Executive

and are

Director

Association

from

of

Boards

Chris

Community

Collins,

Centered

"The

(DBA

Colorado

of the

response

Alliance")

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

1. Dr. Block:

Could you please explain your salary in relation to that of a school superintendent? In the Rocky Mountain region, the average salary of a school superintendent is

$105,639.http://www.aasa.org/career/content.cfm?ItemNumber=2295

It seems to me that the duties of a superintendent of a small district are very similar to

those of the duties of a CCB Executive Director.

We

requested

response

and are

1 & 2)

waiting

Meeker

for a

Denver

(Comment 2)

(Comments

Options

at

and

Developmental

John

Pathways.

Block

at

Stephen

from

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

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

We received shiny calendars in the mail from DP. We would be curious to learn what they cost DP and if that money could have been spent instead on services."

Note:

contacted John

Meeker, us item to

advise ED of

will Pathways the quite

be in response next Thanks, busy.

to week. John, this He has been

An email was

Pathways sent to Developmental on comment.

January

received

No

28, 2007

to date.

requesting has been

Note:

contacted John

Meeker,

us be to in

comment

next advise ED Thanks, of

the

week.

Pathways

John,

response He

will

(Mr.

been

Meeker

quite

never

has

did

busy.

respond.