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

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Introduction A group of parents of adults, teens, and some children with disabilities urgentlyCommittee on Long-Term Care Health Care and Support to Persons Interim needs to inform the with Disabilities (further referred to as “Interim Committee”) about our insights, ideas, concerns and plans. These informed, represent all backgrounds and have children with all active, involved parents types of disabilities. We have united together, even with differing viewpoints, to tell you our stories, our understanding of the issues at hand, and to present you with important ideas and concerns. All parents in this group agree that while we want to provide you with this information as work, we are unsure about how to move forward with our ideas the committee background to because we do not have the resources or information at-hand to provide the committee with the proposal formats you have outlined, analysis you require for consideration. Therefore, along with the cost-benefit our hope is will consider these ideas and incorporate them into other proposals Committee that the Interim provided knowledge and access to information that we do not have. We ask have the by those who that you connect us with these individuals or organizations, as you see fit. Furthermore, parents in this group are unpaid individual advocates for our children. We While we need to have our voices heard, we are doing all of this complaining. are not simply at our ownour jobs, businesses and care-provision duties etc., to advocate for time from expense, taking our children. Please consider this as you read on. Our Stories Attached you will find some representative biographies of some of our children and system in Colorado. We hope that you will read these before continuing the our experience with with this paper. (Attachment #1) Life as a Parent of a Child with a Disability The parents represented by this paper have learned, throughout the lives of their way to get the that the we need for our children is to either create our only adult children, programs own programs and heavily for them. and/or to advocate systems Parents of typical children have access to after-school programs, full inclusion in extra-curricular school and in the community, circles of friends for their activities, sports at children who have many access to higher education and jobs. Parents of activities they do together, typical children arefor their children and for their own retirement. They can to save for college often able reasonably move out at 18-21 years old. children to expect their Parents of children with disabilities rarely have any of the above. All of the money we have) as parents (and don’t have goes to medical bills, paying others to help us with our children, and staying because we work to care for themhome from have no help. On top of this, we have to advocate for our children in with our friends and family. It is a highly the school system, and even stressful, College day job – our one child.24 hour asavings for for other children don’t exist, either. Parents have to learn everything about their child’s disability, everything about the school system and education services , everything about service laws related to special the

disability rights.

systems, and a great deal about

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School systems have limited funding from the feds and the state to address the special education needs of many times special education supports are children like ours – therefore th extremely limited in scope, duration and frequency. Before Ref C, Colorado was 50 in the nation in districts to provide special education services. Children with high needs such as the amount some of the herein are frequently pushed off to the side. represented children of support given to Some parents are told to “institutionalize” our children – when, in fact, there are no longer institutions,that. even if we wanted to do Our children with disabilities are frequently the victims of violence, abuse, and exploitation. Our and the divorce rate among parents of children with marriages suffer, disabilities is thought to be the mother frequently becomes the sole provider 80%. As with all divorces, around without child support. Parents are working with many different systems, many of which we don’t understand. time spend ato find out where we are supposed to apply for deal of our We trying great services, Medicaid, and onsystems, that systems don’t work together – all the SSI and how to navigate the fact while trying to care for There is no place a parent can go, to get complete, onechildren and hold jobs. our stop information on how to utilize the system to meet the need of our sons or daughters. Many of the parents in this group have formed organizations to support our children,active volunteers in other organizations serving our children’s specific become or have had to disability. Some of brought substantial changes to the "system." organizations have these Recently, United Cerebral Palsy, in a report on inclusion, favorably commentedcountry in providing8services outside of institutions. These "nonbest in the that Colorado was institutional"of parent are a direct result services advocacy over many years. We don’t tell you these things because we are complaining. We want you to understand how parents become angry, tired, frustrated, and resentful of the systems that are in place to help us –us much distress – the same systems that our own tax dollars help often cause systems that to provide. When parents complain about the system, we are told such things as “getting services is the the DD being on welfare – and people on welfare don’t get to System from same as complain.” (A true was from a parent who storytold this by her CCB case manager). Facts Although we are parents, we are informed parents. We know what the facts are related tothe delivery of DD services in Colorado. We know, for example problem and the Wait List that: According to the Alliance Report to the Joint Budget Committee in December, 2006, there are 3,746 However, we also know that there are . individuals on the wait list scores of other younger children waiting for Family Support. families with TABOR is a significant, if not impossible, barrier to obtaining new funding. options are limited and the current State budget cannot support Funding increased spite of the recent system in funding to the DD passage of referendum C. The number of resources available to serve our children in FSSP, SLS,

and Comp appropriation.”the “available are limited to CCB’s are providing both eligibility/case management and direct services. This is aIn states generally judged to have the best DD systems, direct interest. clear conflict of services are usually case management and quality measurement. from functions like insulated
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There is vast disagreement between many groups about whether or not there list. Some a state-wide wait-lists as advantageous to some areas, Wait should be see different when to implement a fair, objective system to judge the level of services a State in fact, the failure of the specific person real source of different wait-list times in different regions. requires, is the with DD This problems pits community, parent against parent. community against Mill Levies have been passed in several counties that were supposed to address some of the wait us that State Budget cuts eliminated any gains However, our CCB’s tell list. that were made from those local mill levies to “backfill” loss of support mill levies. The CCBs used from the a severe lack of qualified service providers, housing options, There is State. jobs, daycare, and other services to support the population. The primary factors in this are very low these jobs are the lowest-ranking in the for-profit employment that pay scales, and the notion th system. ranks 48 Colorado in per capita spending on services for people with disabilities. (Attachment #2 - Coleman Institute, State of the States DD 2005), as of 2004. (Note: the State combined with ranking of tax burdens by State for easy reference). been of the States list has There has Colorado’s ranking in this area since 1977, when Colorado was decline in been a precipitous th th 23 Colorado will be ranked 49 or 50 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” People waiting, but not just waiting – People on the Wait List are both adults whose parents have go and young adults who need something productive and may have no place to aged to do with their Nothing happens while they are waiting except that their during the day. time parents have to rearrange their careers, finances, resources, living situations, etc., to accommodate an adult who or who is an 24 hour care either needs adult who need supervision and support to connect with friends and recreate adults are not building upon their K-12 education and can community. Young in the actually lose skills can’tto inactivity. Parents due hold full time jobs and take their adult children to engage in developmentally every day. What’s more is that many parents are appropriate adult activities unaware when their childin services of the drop-off reaches 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 in the way of “case management” while they are waiting. Case receive another, families managers are not prepared to inform parents of potential programs outside of the CCB system. There may be extremely high turnover parent reports five different CCB case managers amongst case managers – one during the past year.parents in this group was not informed of the availability instance, one of the For of the Home Care CCB. Parents can look for services, and can find them, but Allowance, by their cannot have those pay out of pocket. Some programs charge $50 an hour, services unless they just to take to outings or to do volunteer work! Some families actually lose disabilities adults with their Family Support case manager (which varies among CCB’s) if they are using another waiver (and thereforealtogether) and are on the wait list for SLS or Comp Services. Support lose Family Service providers won’t work with “tough cases” -- People who have actually reached the top of the wait list can’t get service providers to work for the allotted amount of funds. The CCB’s for ensuring there are service providers – their responsibility ends responsible say they are not at making the adult child to find quality care for $8 per hour. Parents of the eligible. Parents are unable more severely disabled


. It is likely that

more find that disabled often severely day programs will not accommodate their children because the for-profit world is oriented they have a tendency to cherry-pick the people to making a profit, therefore that they can of costfor the least amount serve to maximize profit. Some other programs are oriented toward a “one sizeof children with behavioral issues are also left out, because approach. Parents fits all” providerseither. prepared for them are not
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Program delivery limited – There is a trend to not offer services on Fridays. Therefore, even if a parent needs to work Monday through Friday, they have no options for a program and would have to have every Friday off. There are no higher education options for people with developmental disabilities – Although there do have students with disabilities, there are no are community colleges that degree programs or in higher ed that can support people with developmental certification programs disabilities. that most parents have no “college fund,” students with Remembering disabilities cannot be in a degree program to get it. because you must get financial aid Many people with disabilities could be working, lessening the need for immediate services – outside the CCB system to support a person with a there are no programs but disability in getting and keeping a job other than Voc Rehab. Voc Rehab is limited and can close cases when an individual is Rehab is unable to provide on-going employment support to work with. Voc too hard to maintainsupports from the DD system, many are unable to maintain without employment, and employment. Waste in the system & how that appears to constituents – Parents continue to wait for services, have adult children sometimes become violent or when nowhere to turn when their their physical needs are beyond the parents’ capacity to care for them. Adult children (and often parents) are living time, parents see that in FY 2004/2005 half of CCB level. In the mean below poverty directors are earning over of them are earning over $200,000 & $300,000. $100,000 per year, with two Some CCB Directorssalary increases from FY 04/05 to 05/06 ($10-20,000). received 10% - 18% People with received a $20 per month increase this year, by comparison. receive SSI disabilities who (Attachments #3, #4) Additionally, highly paid assistant administrators and Financial Officers consume precious resources. What’s more, CCB’s have formed other organizations to lobby legislators and between the CCB’s (CCB Partners and the Alliance) have spent $80,000 on trade organizations and the lobbying. These CCB trade over $750,000, with most of those critically organizations had budgets of needed dollars also provided by the CCBs. We also see the brand new buildings and purchases of extravagant offices by some CCB’s. While we parents understand wholeheartedly that the salaries would not serve hundreds of people – that,want you to and taxpayers who are living in such terrible understand we as consumers conditions, wemoneyto wonderon salaries, overhead and lobbying for so many why so much have is spent CCB’s. We, andthe right to ask this question. We also know that if a statewide taxpayers, have all referendum were to happen, someone would be looking deeply into the waste in the system and ask the question, “The get HOW much?” Yes, we know it is not the single most Executive Directors important issue, but it is simply must ask the question: is there a better way to extremely symbolic. We deliver these services years, has anyone ever looked into this? more efficiently? In 44 Furthermore, we view the value of even 1 or 2 lives of these children and their families as priceless.directors were more appropriate, could even 1 or 2 the salaries of CCB If children in need be served and save a family from hopelessness – isn’t it worthwhile?

We know that CCB’s are nonprofit organizations and their Boards of Directors determine the salariesare not state offices, under state guidelines for their directors – they of compensation. CCB’scoming from the Medicaid Waivers that pay for services. these monies are not also state that But if that available for overhead, is it not available for services? funding is kind of private
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Parents fear of retaliation by CCB’s and service providers - At the initial meeting for we and others mentioned several times that there are parents who Committee, the Interim have experienced retaliation from their CCB or Service Providers when they complain. These individuals provide testimony for the committee. Attached you will find some forward to will not come information from a offered such parents a way to communicate their problem. in May, 2007, that survey (Attachmentwho contributed to this paper face the same fears. However, we We parents # 5) find ourselvesour issues with you because you opened the door for a real communicate able to discussion onto represent everyone. In some ways, we feel it is the feel we need the issue and we responsibility of those who do have you about those who are unable. the courage to come forward to tell Other states are doing great things – We have difficulty, as parents, understanding why many other quality services in a timely manner while states have been able to deliver Colorado cannot. We of it has to do with money. However, some of it is also understand that some do because some states have made this a priority. Ultimately, the states which have made this a priority have done so because of moral values: a good society makes sure that its’ most vulnerable citizens do not live their lives in danger and squalor. Many other states have similar low tax burdens to Colorado, and yet are providing have compared many things to other states in developing this paper. lists. We services without wait The states weas Massachusetts, have similar tax burdens to Colorado overall. look at, such chose to Taxes as a Massachusetts were 9.8% whiled Colorado was 9.5%. In California, income in percentage of th it was 10.3%. Alabama, State of the States, also has the lowest tax burden which ranks 50 in the st while Rhode the top 10 in terms 1 in the State of the States, is inIsland, which ranks of tax burdens. (Attachment #2) New Hampshire just passed a plan to eliminate the wait list in two to three years. Brian Partners from Community Collins of Strafford County New Hampshire is a potential contact for information aboutNH has 10 regions and about 300 people on the waiting what they are doing. list. No comprehensive, unbiased evaluation - Even though we know that Medicaid conducts evaluation, and some CCB’s claim they conduct evaluation, there is no comprehensive outside evaluation of the CCB people who are on the wait list are doing. No system. No evaluation of what evaluation of of programs; nothing that clearly correlates the delivery of a effectiveness the actual service to actual results. is conducted on an “output” rather than an “outcome” other words, evaluation In basis. Again, we must stress that TREA requires evaluation, and that evaluation must be independent of case delivery to mean anything. service management and Furthermore, when surveys of parents are conducted, it is usually easy for the parent to be identified real 3rd party confidential system, in our own the CCB. There is no by experience. they provide only glowing reports so they will not make anyone respond or Parents simply do not mad. People are dependent on the system because there are no other options. People who can work are not working and getting health benefits. The system is set up to create dependency on it, even when be dependent. would rather not parents Lack of transparency means that problems are not addressed in the

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

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Potential Solutions Rep. Garcia has outlined an agenda for the Interim Committee to focus in certain areas. ways to asked for named issues outlined in HJR 1043. The proposals on He has address the following potential solutions same subjects. are outlined according to those 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 also for those attached our personal stories as our written receiving services. We have testimony specifically addressing who are receiving service, as outlined in the those who are waiting and those agenda forsome families represented who have done everything for their also have meeting one. We children on their own with – who prove the ramifications of not having other CCB supports whatsoever no supports outside of themselves. However, parents are not privy to a great deal of the information needed to explain the programs know what we are waiting for, let alone the intricate We often don’t even to you. operations etc.CCB’s, Medicaid, of 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 efficient way to provide services. This has not ever been done, effective, if it is the most costto our knowledge. of CCB executives to be more in line with State salary Adjust the salaries scales; and similar with in the other states we have looked at (California, salaries for in line work Massachusetts, and Minnesota). (Attachment #4) Allow parents to opt-out of the CCB system and use a different type of payment system, possibly voucher system to pay for services we need in with a type of cash/card or a fashion “Mi Via” system. Some parents would like to receive funds Mexico’s similar to New allocatedthatIP's in "debitor family can also contract directly with form so in a consumer card" providers who are Medicaid approved. Develop a method of unbiased, outside evaluation that measures outcomes, the provisionthatadirectly with a measurable result; provide correlates not outputs, of service penalties for service providersmetrics, and when complaints against them when they do not meet target are judged to haveindependent “feedback loop” within the system to force There must be an merit. the desired results. There DD services and key state departments, e.g. the must be linkages between Health Dept., correction of problems. detection and to assist in Write civil rights for people with disabilities into Colorado law, as has beenin California. The desired principle is this: people with developmental Act done with the Lanterman disabilities must have thesupports they need, such that they, and their right to the services and families, can live who do not have disability in their families; similar to people lives that are Review the organization of the delivery system in Colorado. A possible proposal is attached for your ) consideration. (Attachment #6 Mandate that CCB's provide online training for their provider certification. Thistime efficient and could lead to more people willing to become and is much more cost

• •


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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 degrees and certificates that would lead to more success in the could to higher education and workplace and jobs to support them. Some ideas are: • Develop a degree program in the community college system for people with disabilities modeled after Bellevue Community College in the Venture degree program of Washington. ( Create a student loan program for people with disabilities so they can afford to getneed toeducation, without the more be in a degree program. Provide more support for the Transitions programs in the education system to helpcan get jobs young adults ensure that and transition into work life to lessen their dependence on the system. program for other nonprofit organizations that could Create a grants provide more education for adults with disabilities.

• • •

Employment Identify State, City, and County employment opportunities that could be • transformed Developmental Disabilities. Provide training for supervisors in people with into jobs for these government offices with DD in the workplace. Publicize these so they can support people jobs. Work to Work Alliance Program, and others to fill them. the School with Voc Rehab, Convene business leaders through the Chambers of Commerce to come up • with ajobs for people with DD in the workforce, and an incentive to do it. more plan to provide Case Management Provide true case management without a built in conflict of interest that • evaluates (both through the CCB system and outside of the system) to a available all resources family and coordinates those resources and distributes information on those resources to the families. Develop an objective, unbiased system within this State which can • realistically classify level person Until this is done, resources cannot be with DD as to their each of need. allocatedthe SISacross the Intensity Scale, currently being implemented State. If fairly (Supports by the state DDD) system states with highly-regarded DD systems to will not work, consult other find out how they did it. features on CCB websites so that Mandate "cart/checkout" • families/consumers can directlyprograms. This would eliminate the need providers and direct their own access for many manThe money saved in case management hours could be management. hours of case redirected into serviceservices listed persons. and providing direct to wait Mandate lists of providers, their services, the programs they are available • for (SLS, FSSP,etc.) on CCB websites. There is too much secrecy about their HOURLY FEE and how the benefits they are paid and much providers receive.

Other Offer a tax credit for providing housing for a disabled family member or • some property tax relief, etc. incomes (to apply to our children’s needs) that would increase families’ without raising taxes.

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4. Elimination of the Wait List & Funding Options Elimination of the Wait List requires public support, getting people off the wait listthemselves actually support that could 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 for people moving into here for the first time, or any other means to the state, purchasing a home tie a fee to growth. are waiting and provide other options to those who Evaluate those who • could managers need this time. Case be working at to offer families resources. State-wide referendum • What We Want Most Every parent will give you a different answer to the question: What do you want most? Inhave grouptheir number one desire is: alone, parents our said • • • • • Write civil rights for people with disabilities into Colorado law (Entitlement like the Lanterman Act of California). Reduce the wait list by providing access to education and jobs for those who are the applicant when they do need services. penalize able and don’t True case management, separated from whoever does the delivery system, with parent rights. lists. Eliminate the wait Reliability in the service delivery system, so that parents can actually go to their jobs andbe constantly leaving work. and not have to do them,

The bottom line is the same, however. We want our children’s lives to match the lives of typical kids as closely as possible. Our constraints & challenge As we said earlier in this paper, we do not know as parents how else to present youare not paidideas, as work, nor do we have access to what it currently we with these to do this costs orthe financial picture. We have to rely on you, our representatives, to impact how our ideas would help us byyour thinking and potential legislation that comes from this ideas into incorporating our committee.

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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,us. any one of please contact Denver C. Fox, Ed.D. 303-773-3890 Parker, CO Renée Beauregard 303-766-2050 Aurora, CO Renee Walbert 303-328-7230 Denver, CO Lynda Brandt 303-604-2726 Lafayette, CO Gerrie Frohne 303-986-0482 Lakewood, CO Ed Arnold 303-442-2133 Boulder, CO Liz Wuest 303-904-0117 Littleton, CO Sheryle Hutter 303-3643840 Aurora, CO Sam Towers 970-5541886 CO Otis, Sonja Davis Aurora, CO

Diane Winkley Pueblo, CO

Sherri & Bob Martin 303-6712595 CO Aurora,

Dawn Hunter 303794Littleton, 2133 CO

Susan Luff Verlene Betzen 719-573-8690 719-5320183 Colorado Springs, 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 of CCB Director Salaries 3. burdens 4. Comparative salaries of similar agencies in other states, and other administrators Survey Results – and selected stories 5. Retaliation 6. Proposal for Reorganization of the DDD system 7. Pad-CO Hotline questions and responses (or lack of them)

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Attachment #1

Representative Biographies of Some of Our 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 of co-existing disabling conditions and medical problems. Some of his other diagnoses include ADD, PDD, Sensory Integration Dysfunction, Learning Disabilities, Speech and Language Problems, Mental Health issues, Oppositional Defiance and behavioral problems, Executive Functioning/Cognitive 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 so many cognitive issues and short-term memory problems that he is often unable to perform tasks withinas demanded by the workplace. In school, Kyle was bounced from one time, a reasonable period of school and the end, he had to be placed in off-campus programs for kids with another. In program to severe behavioral/emotional problems. Kyle has held several jobs, but has been fired from all of them. He has had job coaches theevery instance through in Transitions program and the School to Work Alliance. One of his employers even fired him job coach said about him! Kyle has received services because of something his from Vocational Rehabilitation, where he was placed in a work adjustment program to work on his behavior in the workplace. That program dismissed him because of his behavior. Kyle has not worked since thatno help until recently. and has received time Throughout the years Kyle has lived at home since he became an adult, he has had no services but those spent his days in his room playing with toys and Yumentioned. Therefore, he Gi-Oh cards no friends and no social life other than Special Olympics twice a TV. He had and watching year. His businesshad before so she could at least be at home with him started a mother years during the day. Kyle became increasingly depressed and frustrated with his life and started taking it out on his parents. Kyle’s parents stress and strain. divorced due to tremendous Kyle’s parent’s moved him into an apartment that costs him 68% of his SSI check. Becauseas obvious as for other people, Kyle’s parents made the disability isn’t Kyle’s decision to learn whether or not of a group home situation so they could plan Kyle would able to live outside for difficult to live with, they decided he should live alone. Kyle has really so his future. Since Kyle is needed SLS skills forhim with daily living to help independence but SLS is not available to him. His parents feared if Kyle was not his own life, the belligerence and enormous making progress toward having behavior issues he hadto escalate. home would continue at Kyle is starting to work with Voc Rehab again recently because of the Social Security Ticket to Work go to college. His mom is crossing her fingers. Program. His dream is to

grade level in math and reading

Family Support ($200 per month) has paid for Kyle’s tremendously large dental billsand therapy with a counselor to help him cope with having a insurance) (after dental disability. Other no information or support for him from her CCB. mother receives than this, Kyle’s At one point, Kyle’s mother sent a desperate e-mail to her case manager after Kyle hadto manage in the home which read: difficult become extremely

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Kyle…continued “I'm writing to ask you if you can give me some information about what housing options MAY be gets his SSI and we reach the top of the waiting available for Kyle once he list. I need with him is so very difficult.” hope. Life some small bit of Her response was: “The adult service waitlist is a statewide resource which means the list does not move enrolling kids are the eligibility date of fall of 2001 for Supportive currently that fast. We with Living May of 2002. That does not provide out of home placement. eligibility date Kyle The comprehensive service waitlist is very very long, which provides out of home placement. SSI will give you more funding looking for Kyle to be out of home, but at this toward housing if you are a time DP hasprogramsin either of the adult no slots that would be funded by the state. If Kyle would be out of homethat out of his SSI or his own pocket.” pay for you would have to 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 before herthe CCB because they spent their days not being able to left their jobs at who have providethat there can’t be a better way. accept any hope – she doesn’t The sad part of all of this is if Kyle does need a placement because he is not successful case manager’s suggestion will not even work. SSI would not cover place, the living in his own the cost of and hishome do not have money to pay for it. Kyle’s parents are placement out of parents very worried thatSupported Living Services, Kyle’s parents are constantly happen. Without this may waiting for “that phone call.”

Name: Johanna -- age 23 Wait List Status: receiving SLS, on wait list for comp on Wait List: 9 (since age 14) Years CCB: Imagine Johanna (Jodi) has been jokingly called an "oldfashioned girl" by some has quadriplegic athetoid pediatricians because she cerebral palsy with spastic components. This was a more typical disability prior to about 1975. Her cerebral deep and palsy was caused by exceptionally lengthy birth. time of asphyxia that occurred at Jodi's primary diagnoses are quadriplegic cerebral palsy and legal blindness. The pattern ofled to one incompletely-formed hip and shortened leg on that in adulthood, damage has, side. Functionally, cannot stand, sit-up, crawl, feed herself, toilet herself, or these deficits: she Jodi has pick up and holdeasily-grasped objects while she is side-lying. Jodi is nonexcepting large, any object

verbal. Because of herrequires 24-hour total care. physical deficits, Jodi Nonetheless, Jodi's zest for life is obvious, and one might even say, contagious. She iswhom the extent of her disability does not seem to matter. happy person for an exceptionally Because she has no behavioral issues, other than a very obvious reaction to music she interprets as sad, those who provide a positive experience. However, the physical aspects care for her regard it as of her care are difficult for a due to the necessity to lift her between bed, majority of her care providers, couch, wheel-chair, stroller, shower chair, and van.

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Jodi..continued Jodi's parents were able to maintain her weight via hand-feeding for 21 years. However the severe time constraints this caused created problems within the family. When Jodi left school atof her para-educator were lost, Jodi dropped down to 63 pounds. The services age 21 and the parents g-tube a decisionbutton) implanted in 2006, which eventually brought have a made (Mickey to her weight back upthe 80 situation more manageable for parents and other pounds, and made to care care-providers. Jodi's parents have managed the situation because Jodi's mom abandoned her plans or full-time. Jodi's dad has maintained a near full-time work schedule, half- to re-enter work either helping to provide care Jodi's mom has converted her work to occasional evenings and weekends. subbing jobs at dad or on weekends, whenlibraries other care providers are available. Jodi's parents are quite concerned about the obvious downturn in services to the DD population past 15 years. Jodi's mom has an unstable shoulder and Colorado over the in other skeletal andto 23 years of lifting. Jodi's dad has had a 15-year stressproblems related muscular related illness that led to thyroid failure and neurological disorders. Both parents are concerned that the downturn in means that the comprehensive services that Jodi will require will in Colorado DD services not be availablebecome physically and/or financially unable to care for her. after they have until long

Andy -- age 40 in August Currently Receiving Comp Services Years on Wait List prior to receiving Comp Developmental Pathways CCB: Services: about 10 Andy has been diagnosed with “pervasivePalsy,” “brain injury,” “Cerebral developmental disability,” “seizure disorder,” “profoundly disabled,” “hyperactivity,” “perceptual disorder,” “behaviorally of other challenged” and a variety labels. As a experience was hospitalized numerous times, including a near-death child, Andywith continuous seizures (status fell out of bed and was paralyzed from the waist epilepticus). In 1998, Andy down (the injury was osteoporosis). After 3 months in Craig Hospital, his aggravated by severe family and others spent 2 with Andy so he could regain use of his legs. in intensive rehabilitation years Andy currently lives in a “host home” with a loving caretaker. Prior to the “host home” he lived withand Nora (now 69). He has a brother, Tim, who, in parents, Denver (now 67) his 1986, was paralyzedin a sporting accident. Tim, still totally paralyzed, is now a the shoulders down from well known civilgraduated from Stanford Law School, and has a law practice attorney, having rights with his wife, and fellow attorney, Amy Robertson. Prior to the “host home” Andy lived at home until his early thirties. For almost all of those years, his

all of those years, his no respite nor opportunity to be alone, to engage in parents had absolutely church, recreational ornear the end of those years that some family respite was activities. It was only social provided through newly funding. instituted “family support” During his early school years, Andy was not allowed in the public school system. We day,up an intensive week home therapy and educational program 13 hour per set seven days per usingsix years, until PL 94-142 passed, requiring the public schools to provide over over 350 volunteers services to those with profound disabilities.

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Andy…continued Andy’s day program has been problematic since the program his parents ran for himMountain Job Opportunity Brigade, had to close in about 1999. This Rocky and others, the program, designed by his16 other individuals with profound disabilities and father, served Andy and marked behavioral challenges in a real community work environment. At that time, the DDD system allowed no more funding for those than those with minor disabilities, and despite with profound disabilities extensive fund raising,supported by the “system” and had to close. adequately financially it was not Over the years we have had continuous and never-ending meetings with the CCB to havemanagers” and developed to meet his needs. We were told by staff “case a day program Developmental different case managers this past year. Sometimes, we don’t Andy had five Pathways that even know we requested Five weeks ago their names. a funding increase from DDD to better provide for his needs. lost in the bureaucracy. I have asked for an update, but have received no seems That request now further information. So, even at this moment, it has been a continuous struggle and fight by his parents to find anAndy’s needs. At times, his caretaker must come and get him program to meet adequate from theof behavioral challenges. We (his parents) are always on pins and because current program, needles awaiting that “next” phone call. We look at the future with dread. We will die before too long, and there is no adequate system to provide support and advocacy for Andy. We have made his brother the co-guardian, but it to assume this responsibility. Andy has no relatives who have the have is a shame for Tim to slightest interest in him and his welfare. Aaron, age 20 Currently on the wait list for SLS & Comp Services Wait List: 6 Years on Aaron is on the Wait List for both the SLS and Comp waivers. He went on theHe is now 20 wait list right away at age 14. years old. Once a year we get a visit from a case manager at ouron the Waitwe see where believe those he is CCB, and List (if I can numbers) and we are ablelittle assistance in the for Family Support for a to apply meantime. But other than help paying for camp last year (camps for kids with disabilities being way more expensive than your local scout or church camp!) we haven’t accessed it much. All of the that Aaron has accessed, we found on our own and in fact, often programs services and have managers over the years letting them know about things available to case served as resources to the families. Aaron already lives on his own through the EBD waiver (he has physical and medical needs in addition to cognitive) and we use the 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 funded (his home more than those waivers usually supply) and you can’t access needs would cost care two waivers atnow,samegive up the community support that SLS would have time. So right the we

provided inwe need under EBD. home care order to use the A comp waiver would address all that, but I’m confused about how that would look. If he went would have enough money allotted in his waiver, in theory, to group home, he to a pay his And lodging, and support. food, all his SSI money, except for a small personal allowance each monthand some to buy one would go to whoever was the provider. pizza (enough shampoo) But he has a section 8 housing voucher and uses it to pay for his apartment, and then uses the restphone and electric bills as well as groceries. But he has SSI to pay his cable, of his more left over than he would for pizzas, coffee shops and movies. If he got a under the comp waiver to pay comp waiver, would he give up his section 8? Or would he keep it and stay in his apartment, but then his home health needs

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Aaron…continued would be paid for under comp and if that’s the case then in theory the DD system less than if he would be a Section 8 voucher? paying and Medicaid didn’t have And if those vouchers help shift costs in the system, are we advocating at the federal/state number of vouchers available to folks with DD? Aaron wants to increase the level to live in his ownor a host home. a group home place, not in Anyway, it’s just a flat out confusing system. If Aaron didn’t have us to advocate for him, and if we if the state were to come in and assume suddenly out of the picture, were guardianship (or give it him in nursing home. And because nursing homes entity) they would place to some aother are funded under yet a different Medicaid funding mechanism, there would be those funds available for him. Yet even with his a lot of support, he’s able to live on his own—but cognitive disabilities, with only because he got that is less than if he were in a nursing home. Frankly, a EBD waiver. And its cost nursing home is never an So if there is money for a nursing home waiver, appropriate option anyway. why not for less and waiver which costs a comp 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 year know him and Smiley, and he is a valued member of his value him. Everyone calls him community. He wants to maintain that. We moved him to his apartment and subsidized him till he got a Section 8 voucher and getting that was a miracle unto itself. Aaron has a girlfriend who also has developmental disabilities, she lives in Colorado Springs married some day. We won’t even go into how complicated would like to get and they trying to moveanother is! community to from one Does Jane Q citizen even know the difference between an EBD waiver and one of the DD waivers? Probably not and 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 money, pay his bills, assist him in making good health decisions manage Aaron, helping him etc. would probably especially anyone who has no background what so ever. overwhelm anyone, We’ve best as we to figure it days I think we have a handle on it, but then I get out as had to try can. Some sick or and it can all come crashing down around us like a card house. I have wrong something goes given up much in the way of I’ve had to work from home and be flexible in income over the years because order to meet the kid’s needs. Deidra, age 17 (Aaron’s sister) Deidra, our 17 year old, also has medical and developmental issues and is a little person and legally blindlist at age 14.too went on the wait besides. She I expect that her needs could But I through the SLS waiver. be metcan’t even see the end andthe tunnellist.terms of her of the wait in She too would like to get married some day; Iplace by then because supports in hope she has more it’s complicated having a spouse with a disability!

"Alan" (Pseudonym) - age 36 Wait List Status: Receiving DDD Comprehensive Services since 8/03 18 (from age 14, when 1st Years on Wait List: eligibleDevelopmental Disabilities Resource Center CCB: for "The List" (DDRC), in Alan preferred that his photo not be used Photograph: Jeffco Alan has lived in CO since age 7. He attended a segregated school for children with disabilities until age extricate him (against school district desires) to a 16, when we were able to typical Jeffco high school,

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Alan…continued where he was able to enjoy attending regular classes and contributing on the yearbook, newspaperenjoyed attending school sports events and school dances. Student Council. He and Before graduation, with the help of excellent physical and occupational therapists,was began 2stamping library materials at the Golden Public Library jobs: one he rubber part-time where he still works 15 years later. The second job is running the clothes conveyor at a dry cleaners; he continues tocleaners job, for his 4th dry do this owner. These jobs are possible with the help of very creative, state-of-thenot able to move any body parts except his eyes, his head technology. Alan is art (less than an inch to access a switch), and recently an inch to access a switch with his hands through dedicated Feldenkrais Therapy. to learn!) (True that we are never too old Prior to Alan's coming off of the DD Comprehensive Wait List (due to the very unfortunate death of I were living in our family home, two siblings another young man), he and having grown a heart attack and was very stressed caring for Alan's daily needs on. I had had up and moved and working 20 hours perbecause Alan's nighttime care was cheaper than his week on graveyard shifts daytime carework and recreation). His care is 84 hours out of a possible 168 hygiene, his (feeding, hours in a week (thenpaid employment, getting groceries, and an occasional the caregiver's sleep, add in shower!) I didthis challenge was until I was no longer doing it. how difficult not realize We were able to find a very good provider for Alan's Comprehensive Services. R and his wife movedto provide 24/7/365 services. R became his own agency, into our family home so that he did notprovider agency between himself and the CCB. Alan wanted pay 15-30% to a have to to havedays samenights because Alan is non-verbal, has an eye-gaze during the and caregiver communication system and feared "miscommunication" between caregivers. R is the total care provider, but his wife, grown daughters and Alan's "family". Alan's provider receives $90,000 grandchildren now round out in taxpayer dollars forwould have to provide, if R was not willing to do this the care that 4 nurses very stressful, physical work. Due to Colorado DDD rules, a family member (myself) cannot live at the same address as someone receiving DD Comprehensive Services. So I must unnecessarily spend $7000 for apartment expenses, master bedroom/bath go unused at Alan's house (our while an "apartment-like" formerIS JUSThome). STUPID POLICY and needs to be changed! The $7000 THIS family PLAIN would go toward future wheelchair accessible vans, or major house upkeep (roof, etc.). No living arrangement is perfect, and Alan has experienced some recent health concerns. As a mother, I can believe that "pneumonia, pressure sores, possible conversion to Gtube feeding" would not be issues if I were still caring for Alan. However, at 67 and unhealthy, my returning to full time care giving is term. But Alan's quality of life (Bible study and church, unrealistic-and short playing church music on a Dynavox communication device, loving his jobs, cheering on candidates, attendinggames, andNuggets and Rockies Broncos, enjoying social events with his siblings and their children) is good. that way after I'm dead. remains Let's hope it

Ron -- age 40 CCB Services – Never applied or received services as a has and has hadhe job. lived at home Don Jr., Age 43 CCB Services – Although fully disabled and unable to work, does not qualify for services because his disabilities do not include a developmental disability. Ron suffered a lack of oxygen during childbirth and was deemed developmentally disabled from birth. Upon evaluation at age 4 we were instructed by Children’s Hospital that Ron would never read, write, or institutionalize him. We refused to believe that hold a job and that we should this succeed and sought out the best public education opportunities to maximize not beautiful child would his abilities, we spent

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Ron & Don continued…. thousands of hours working with him at home to support the education that he wassuccess. We are so much more fortunate than so many in similar situations his receiving and promote as Ron can read at a 4 with the computer, and he has a job that he has been grade level, he is a whiz at for 17 years Assistant), and he is an asset in the community. All of us are Education Bus (Special so fortunate and able to be relatively independent. functioning that Ron is high Ron received SSI and Medicaid for a short period of time during his teenage years mom, dad, lot of help teachers during high school he was able to get a from but with a and devoted job that allowed usWe get out of the system. to never applied for other services as we knew how many people were waiting for and hoped we could handle the situation services with much greater need within our family. Our older son Don Jr. (43) is fully disabled and unable to work. He has physical and neurological disabling. Don,Jr’s issues did not surface until he disabilities which are fully was 27 years old. He and Medicaid and finally after 6 years of appealing applied for SSDI, SSI, denial after denial and with at Colorado Cross Disability Coalition he was assistance from Julie Reisken finally approved for SSI and Medicaid. In addition to serious disability, Don Jr. is surviving a bitter divorce that has made his medical issues even independence and with a lot of help and worse. He attempts to maintain communication withfairly independent, still living in a rural community on the been able to remain friends has western slope. would be such a big help to Don Jr. as he strives for CCB services Although independence, he as he is not developmentally disabled. We provide a home for CCB services doesn’t qualify for him, he receives by the system, unassisted Medicaid, Food Stamps of $139 a month and SSI of $443 per month which doesn’t even cover his utilities, over the counter medication, or gasoline to provide transport toDon Jr. wantsthe remain independent and we are tying to support pharmacy. doctors and to that desire. We are getting up in age with Dad 65 and Mom 62. We worry continuously about what will happen to our two vulnerable sons should something happen to us. We are so much more fortunate than so and families that our son’s remain relatively independent, other individuals many howeverour assistance neither would be able to continue with the independence without feel certain that they each currently attain. Unless placed in the position, no one understands that for most parents, obligationage ofwhen children independent (financially and socially) however reach the ends 21 or become when disabilityobligation of caring for, advocating, and protecting not only it is a lifetime is an issue, their vulnerability but ultimately their life. It is such a struggle to understand the system, not to mention having to fight for every single benefit. The even when eligibility has been determined the road to eligibility is rough, but road to services and resources is full of chuckholes, wrong turns, and one way streets. This must be changed to mostly tothe the individuals and families to meet the second to system but improve help 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 wait list: 5 (since age 14) Years on
CCB: Imagine Chris is a delightful, smart young man who has autism, sensory issues,encopresis. He has some very difficulties, ADHD & speech good very well. He issupport child of his divorced does skills and with an only Mom.

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Chris…continued He was diagnosed with ADHD in kindergarten, then PDD-NOS, then Aspergers withat age 11His Mom started her own accounting business when diagnosed and Autism. was Chris was 8 yrs in to be able have the flexibility order to to take Chris to the numerous therapies and doctorthe school when called as go to appointments as well upon which generally amounted to at least once a week. Chris graduated from high school last year and is currently in the transition program through BVSD. His graduated her life would be easier. To her Mom thought that once Chris amazement she found that giving took much more time. She estimates that the support Chris needs to succeed she week keeping Chris on track and successful. per spends at least 20 hours Because of the hard work of Chris’ Mom he works part time at the County Assessor’sstables. and also does some volunteer side walking. He took at a local office He part time therapeutic riding a very for 10 years and became lessons good rider and has rode in competitions. His passion is to work order for Chris to get to all of his activities and allow his Mom to horses. In outdoors with work sheto decidehim a car.being a full-time chauffeur and support person, She had bought between which was out of His question alone costs as much as he makes at the or buy him a car. the insurance Countypeople he is still unable to work full-time to pay for this. Without his young Assessor yet unlike typical carthe stables,be unable notget a bus route. to he would which is to on Chris is generally a happy guy but has his moments of depression due to lack of friends, He would and to live on his own but is unable to because of activities. direction like finances and unavailable. His Mom keeps him as busy as she can but it is not supports are the necessary enough. He SLS services because his Mom was having a tough time working Emergency recently got and helping Chris. Chris’ future is very bright given the right support system. It is conceivable that he could at some time member and work full-time. become an active community

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

Attachment 2

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Attachment 3

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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, thereforeto obtain IRS 990’s. Therefore, we contacted some states: possible it is not Minnesota (tot. state pop. 5,167,101): “Salaries in MN for regional DHS positions are in the $60,000 to $80,000 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 an average Regional Director salary of $100,000 and additional benefits of 30%. The four RD’s manage 18 Area Offices Statewide.” 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 listed on Guidestar except where noted. (Note: California’s cost of living is IRS recent significantly Colorado’s). higher than 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

Attachment 4

Persons served: Not available. Other Salary Comparison: School Superintendent We believe that an Executive Director of a Community Centered Board has responsibilities almostsuperintendent of schools. duplicating those of a In FY 2004/2005, the Superintendent of Jefferson County Schools in Colorado earned $167,247 plus typical state and county benefits, managing a budget over $550,000,000.00 and thousands of children The American Association of School Administrators reports the average salary of and staff. Superintendents in the Rocky Mountain Region in 2005/2006 as $100,802

Salaries of Executive Directors and other administrators of Community Centered shown on the Attachment 3. Boards in Colorado are

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COMMENTS FROM A RECENT RETALIATION SURVEY OF PARENTS OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES Question asked: Please tell us about your fear of retaliation. Why do you have this it stop you from complaining or taking action in any way? fear? Does
Comment Text 1. Whenever I question the services or why they won't provide what is requested, my son's manager gets in trouble as does the provider. The administration seems so case 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 even find 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 a response 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 in blank." We hear this as "the funding will be cut if you do not x,y,or z." What I have the 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 actually job. The bottom line is more important than the quaint notion that service is doing the 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 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. 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 and are no longer "able" to serve you. Trouble is they don't stop to think that parents they talk to each other and so you know your kids money went to someone else who will kiss them and say glowing things until they get screwed and then they lose funding up to too.

Attachment 5

Response Date Wed, 5/30/07 9:21 AM

Tue, 5/15/07 7:30 AM

Mon, 5/14/07 9:34 AM Tue, 5/8/07 5:39 PM

Tue, 5/8/07 5:32 PM


Tue, 5/8/07 10:26 AM



I fear a "shutdown" in communitcation and an attitude of doing only what they are required to going above and beyond. I do not have fear of retaliation, I have fact of retaliation. It does not stop me from doing and advocating for individuals in services including my son. However, the fact my job 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.


Tue, 5/8/07 9:51 AM Tue, 5/8/07 9:48 AM


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.

Tue, 5/8/07 7:32 AM

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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. 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 as to her; they'll start to put her in the middle of the disagreement; the bonding falls nice 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? 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 retaliationbeen an issue with me despite my ordeals, but has been an effective rallying has never cry for activism. 15. It happens so the fear is real Mon, 5/7/07 9:23 AM Mon, 5/7/07 9:21 AM Mon, 5/7/07 9:25 AM Tue, 5/8/07 5:51 AM Mon, 5/7/07 8:40 PM


Mon, 5/7/07 8:31 PM Mon, 5/7/07 9:52 AM



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.


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.

Mon, 5/7/07 8:41 AM Mon, 5/7/07 6:48 AM Mon, 5/7/07 4:35


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 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


schooling and 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. it will not stop me


Mon, 5/7/07 3:55 AM


Sun, 5/6/07 5:27 PM

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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) 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 CCB which would the combined state processes. not be necessary with * Keep (or set up) separate small non-profit "Foundations" associated with each new and other donations for the new "center" to receive grants 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 of a mandatory majority of parents 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. There would be portability between service areas. Once at the top of the wait list, then the centerwould be responsible for finding or wherever someone lives developing an appropriate placement. * Independent service providers would continue to be contracted with,could become the backbone of the system. they as now. In fact, * Those CCB's that provide services could have the option of converting that separate agency, either for-profit or non-profit, to function into a service contract with the new center.

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

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Attachment 7

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 "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? We have previously awaiting requested a Executive and are response Director from of CCB Cami Partners. Learned,


Thank you for differences pointing in the activities. out the reporting We have information of to our forwarded on their lobbying the Auditor's

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." 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.

their lobbying the Auditor's review office for and Joan resolution. Marwitz Director, Denver Options

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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." 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. 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. 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: We requested response and are from2) 1& waiting Stephen at Meeker for a Block Denver (Comment Pathways. 2) (Comments Options at and Developmental John

We have previously awaiting requested a Executive and are response Director Association from of the Boards Chris Colorado Community (DBA Collins, Centered "The Alliance")

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

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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, 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: John contacted Meeker, us to item ED of advise will quite Pathways the be in busy. response next Thanks, to this week. John, He has been

An email was sent to Pathways Developmental on comment. January No received 28,date. comment to 2007 requesting has been Note: John contacted Meeker, us in be to ED of advise next Thanks, Pathways the week. John, response He will (Mr. has Meeker been never quite did busy. respond.