2012 SSUES FROM PAD-CO

Each week before and during the legislative session, PAD-CO (Parents of Adults with Disabilities inColorado) will email to each Colorado Legislator "Issues from PAD-CO" - a current, concise, informative email on important disability issues.  

"Issues from PAD-CO" will also be posted below.  Click on the link to read the articles.

For further resources and information, contact a PAD-CO Resource Parent by clicking here.

EMAIL DATE

TOPIC/LINK TO ARTICLE

Special April Article

Audit shows a $3.2 million CCB profit for FY2011

#24 - May 8, 2012

PAD-CO's Final Article of this Series.

 

#23 - May 1, 2012

PAD-CO wants to Save Medicaid Dollars, also!!  Presenting the third of three articles on ways to save money.

 

#22 - April 24, 2012

PAD-CO wants to Save Medicaid Dollars, also!!  Presenting the second of three articles on ways to save money.

 

#21 - April 17, 2012

PAD-CO wants to Save Medicaid Dollars, also!! Presenting the first of three articles on ways to save money

 

#20 - April 10th, 2012

A Waitlist of Thousands

 

#19 - April 3rd, 2012

Where is our Silo?

 

#18 - March 27, 2012

Responses by PAD-CO (Parents of Adults with Disabilities in Colorado) to State Responses to two more of the Baker's Dozen Questions Posed by PADCO (#7, January 10, 2012)

 

#17 - March 20, 2012

Thank you, Legislators, for passing HB 12-1177

 

#16 - March 13, 2012

Responses by PAD-CO to State Responses to Two of the Baker's Dozen Questions Posed by PADCO (Article #7 - below -  January 10, 2012)

 

#15 -  March 6, 2012

Improving the Developmental Disabilities Delivery System; Two Suggestions

 

#14-  February 28, 2012

Killing the Golden Goose, Slice by Slice . . .

 

#13 - February 21, 2012

Please support HB12-1177, providing critical relief for individuals with developmental disabilities

 

#12 - February 14, 2012

Thank you, Colorado Legislator, on this Valentine's Day

 

#11 - February 7, 2012

Let's talk about a wasted $38 million in Colorado

 

#10 - January 31, 2012

PAD-CO Resource Parents and Family Members Who Would Like to Communicate with You

 

#9 - January 24, 2012

Is compensation of $437,023 to $74,475 appropriate for our Community Centered Board Executive Directors?

 

#8 - January 17, 2012

The Risk of Colorado’s Fragile System of Supports for People with Disabilities

 

#7 - January 10, 2012

A Baker's Dozen of Questions that Need Answering

 

#6 -January 3, 2012

Building a Report and Proposed Program on Quicksand

 

#5 - December 27, 2012

Results of Citizen Requests for CCB Information Vary Markedly by Location

 

#4 - December 20, 2011

The allure and fallacy of "Natural Supports" to provide services to those with disabilities

 

#3 - December 13, 2011

Daily schedules of 6 families with disabilities

 

#2 - December 6, 2011

Is the Disability Delivery System being redesigned backwards?

 

#1 - November 29, 2011

The unforeseen terrible effects on individuals with disabilities and their families of HB 10-1146 (State-funded Public Assistance Programs)

 

 

 

 

 

 

 

April, 2012

 

This is a special "Issues from PAD-CO" article.

A non-profit Community Centered Board, Developmental Pathways, Inc., reported in its December 7, 2011 Board meeting minutes a profit of $3.2 million dollars. Specifically, the CFO, Lloyd Sweet reported that

"FINANCE COMMITTEE REPORT – Lloyd Sweet
Lloyd reported that our most recent audit is completed. Copies were distributed for board member review. Lloyd asked board members to call him with any questions. The goal is to post the audit on our website by the end of the week.
The audit shows a $3.2 million profit for FY2011."
This profit is reported at the same time that thousands of individuals with Developmental Disabilities are on the waiting lists for even the barest of services.

 

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#24 - May 8, 2012

 

PAD-CO's Final Article of this Series.

 

Dear legislator,

 

We started this series of articles with a personal letter to you, describing our difficulty in appearing and testifying at the legislature because many of the families in PAD-CO (Parents of Adults with Disabilities in Colorado) are busy providing services to their child(ren) with profound disabilities. We stated we would be using emails for brief articles on important subjects.

 

We attempted to keep our articles meaningful, factual, short and "to the point." We hope we have been successful.

 

This is our last in this weekly series, although we may provide you with additional information at times during the upcoming year.

 

We give a very special thanks to those of you who supported legislation aimed at ending the waitlist and resolving the Home Care Allowance debacle.

 

We would appreciate any feedback you may have on the 24 articles, "Issues from PAD-CO" that we have provided for your review. Please send any thoughts to:

padcoweb@aol.com

 

Please review the articles we have sent out.

 

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May 1, 2012

 

Issues from PAD-CO #23

 

We Want to Save Medicaid Dollars, Also!!  This is the third article of three articles on saving money.

 

Part 3 of 3

 

PAD-CO believes in saving state and Medicaid dollars, and in providing better services by making these changes in state policies and procedures:

 

7. Parents, families and Individuals with Disabilities want to save money and receive cost-effective, quality services, but that can happen only if we can participate in the decisions. We often do not get that opportunity,  The state needs to utilize existing technology, such as GOOGLE+, SKYPE, WEBINARS and other similar processes to improve opportunities for parent participation.

 

8. The assessment tool used by the Division of Developmental Disabilities (Supports Intensity Scale) fails to consider the environment surrounding the individuals with disabilities. Some environments require more supports,others less. Yet, funding is the same, no matter the environment, resulting in uneven and inappropriate services.

 

9.  Seriously explore methods where the $38 million (or at least a portion) received by the CCBs from County mill levy funds could be matched by FMAP (Federal Medicaid) dollars, providing an additional $38 million to services for individuals with disabilities.

 

Perhaps if we can save funds by using the above techniques, we can help to serve the 62 individuals with critical needs on the EMERGENCY WAIT LIST.

 

 

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April 24, 2012

 

Issues from PAD-CO #22

 

We Want to Save Medicaid Dollars, Also!!  This is the second article of three articleson saving money

 

Part 2 of 3

 

PAD-CO believes in saving state and Medicaid dollars, and in providing better services by making these changes in state policies and procedures:

 

4. Reduce administrative and other costs. Examples: some of us have several case managers, while one should be sufficient. Also, some administrative salaries in our Community Centered Board system are far higher than similar administrative positions in other states, once again stealing money from individuals who desperately need services. The county-provided single entry points, directly under HCPF, seem to provide satisfactory services.

Also, how much bricks and mortar do we really need?

 

5.Using common sense on controlling costs: Hard and fast rules - supposedly designed to control costs - in waivers and other policies, can actually increase costs. An example is the dental provisions in waivers that do not allow appropriate and complete treatment, ultimately resulting in either poor health or more expensive treatment.  Perhaps an “Ombudsman of Common Sense?”

 

6. Requiring an individual who needs1:1 services because of their behavioral issues, to receive “group” services; causes more expensive mental health problems Similarly, Individuals with Disabilities, who have extensive physical needs, can get physical health problems from being in group programs where they are ignored. E.g. dehydration; UTI or skin problems from diapers not being changed; stomach cramps from not being fed, leading to behavioral and other issues; and more costs.

 

Perhaps if we can save funds by using the above techniques, we can help to serve the 62 individuals with critical needs on the EMERGENCY WAIT LIST.

 

Standby for next weeks article!!

 

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April 17, 2012

Issues from PAD-CO #21

We Want to Save Medicaid Dollars, Also!! This is the first article of three articles on saving money.

PAD-CO believes in saving state and Medicaid dollars, and in providing better services by making these changes in state policies and procedures:

1.Self Direction by Individuals with Disabilities and their families. Across the country, evidence shows that, with appropriate established procedures, when Individuals with diabilities and their families are provided opportunities for self direction in their services and service providers, better services and cost-savings result. Below is the many-stepped current chain of cash flow and service approval. Each step gobbles up dollars, stealing them from the needed services of individuals with disabilities.

Suppose we had a system like the one below?

Think of the reduced overhead and administrative costs. Yet, the State of Colorado has continuously resisted providing self-direction in HCBS waivers and implementing legislative mandates to so do.

2. Providing appropriate support to access the community alleviates potential mental health and behavioral issues. Failure to provide funded support to help individuals work or volunteer in their community – getting out of their residence - risks incurring expensive mental health and related behavioral issues. Yet, community hours have been continually reduced.

3. Lowering the 30-40% administrative overhead dollars to PASAs (Program Approved Service Agencies), the companies that provide services to people with disabilities, a LOT of public dollars wasted!

Perhaps if we can save funds by using the above techniques, we can help to serve the 62 individuals with critical needs on the EMERGENCY WAIT LIST.

Standby for next weeks article!!

 

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#20 - April 10, 2012 - Issues from PAD-CO  (Parents of Adults with Disabilities in Colorado)

 

A Waitlist of Thousands -

 

Nationally viewed waitlist video produced right here in Colorado by PAD-CO (Parents of Adults with Disabilities) parents.

According to a JBC analyst's presentation to the Joint Budget Committee this fiscal year, the June 2009 figures for Colorado's waitlist for services to those with Developmental Disabilities was approaching 9,000 folks. Nationally, there are hundreds of thousands of individuals desperately in need of services.

A PAD-CO participant wrote and produced a video that has been viewed by almost 12,000 individuals across the country, which explains the waitlist issue and a bit about another organization which we at PAD-CO started, NOEWAIT (The National Organization to End the Waitlists) which.is based right here in Colorado.

Please take 5 minutes of your valuable time to view this video and learn about waitlists for services for individuals with developmental disabilities and NOEWAIT.

http://www.youtube.com/watch?v=TxTESMHWepM

Then, take one more minute and click on the following link to see NOEWAIT's web page.

http://www.noewait.net

Please help eliminate Colorado's long waitlist for Individuals with Developmental Disabilities.

 

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#19 - April 3rd "Issues from PAD-CO"

 

Where is our Silo?

 

We circled the silos in our old handicapped-equipped van.  There were many, each with a label on the side.  Some were large, some smaller.

 

We immediately noticed that none of the silos were connected by a  pipe or other device to move its contents to any other.  Each was separate.

 

The first silo was labeled “Salaries.”  It was full of money, but there were workmen at the top of the silo frantically adding additional layers of red bricks, as it was getting full and more space was needed for the money for the salaries.

 

Another silo was labeled “Bricks and Mortar.”  It was also almost full and had recently been enlarged.  There was money there also to purchase more bricks and mortar.

 

We drove a bit further and found a silo labeled “Computers, Office Equipment and Supplies”   It was nearly bulging at the seams.

 

Down the hill was a smaller silo labeled “Organization Charts.”  We were worried about spontaneous combustion and a fire from all the paper.

 

Then there was the “Audits and Studies” silo – it looked like an auditor sitting on the top so the wind would not blow them away.  Paper was being hoisted up by a conveyor belt.

 

Another silo, this one almost filled with money, was labeled “Administrative Costs and Overhead."

 

There was a silo nearly overflowing labeled "Committees" and we looked with our binoculars, and as far as we could tell, it was filled with camels!

The silo labeled "Boards of Directors" was most interesting as it was filled with signs that said "Yes" and "We agree." It was fenced with a gate and a sign stating, "Only team players allowed."

There were many more silos.

And, way off to the side, not even in the silo field, was a tattered box labeled "Inclusion of Families and Individuals with Disabilities."  It was almost empty!

 

I saw a “Director” walking in the silo field and asked, “Where is the silo for “Direct Services to Individuals with Disabilities.”  The Director said that there was no silo for direct services.  The rule was the money for direct services only came when all the silos overflowed.  The silos in the main field all had to be full first before they could turn the faucet on to serve individuals with developmental disabilities.  However, the tattered box didn't count.  The Director said that since none of the silos were interconnected, Direct Services would have to wait until all the silos were overflowing.

 

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#18 - March 20th, 2012 Issues from PAD-CO

 

Responses by PAD-CO (Parents of Adults with Disabilities in Colorado) to State Responses to two more of the Baker's Dozen Questions Posed by PADCO (#7, January 10, 2012)

 

PAD-CO’s Baker's Dozen Question #1. Why do I get 3 paper notices a month (all with postage) for each person on Medicaid in our family stating that (a) their Medicaid has been approved for the month; (b) stating the appeal rights to letter A; (c) stating the HIPPA regs?

 

RESPONSE BY STATE:: The state responded by citing numerous regulations they must follow, and concluded with: “The Department is continuing its efforts to reduce the number of notices that are mailed to clients while still remaining in compliance with noticing requirements”.

 

PAD-CO RESPONSE TO THE STATE RESPONSE:
We commend the state on their efforts to reduce costs by eliminating duplicate and triplicate similar mailed paperwork. We strongly suggest that the state request input from consumers about identical and unnecessary notices, and that the state change policies and procedures on local, state and national levels to reduce inefficiency and added costs. The saved postage dollars, reduced paper usage, toner, envelopes, "collating and stuffing time" (whether by hand or machine), staff to oversee these operations, equipment maintenance costs, and related utility costs would likely fund services to several desperate individuals and families who are on waiting lists.

 

As affected parties, we at PAD-CO seek your assurance that we will be informed of the results of this investigation of and elimination of redundant practices.

 

BAKER'S DOZEN QUESTION #8. Why don't CCBs ensure that all clients and their families/guardians have ready access, in various formats, to easily understood info about the various programs that may be applicable and beneficial to their daily lives?


RESPONSE BY THE DEPARTMENT OF HUMAN SERVICES: Single entry points, including the Community Centered Boards (CCBs), are statutorily obligated to assist persons who are eligible to obtain “long-term care”. They also provide information and referral services to assist individuals in meeting those needs. The CCB contract specifically requires the agencies to determine eligibility and authorize services through the home and community based services (HCBS) waiver programs for: individuals with developmental disabilities (HCBS-DD); supported living services (HCBS-SLS); and, children’s extensive support (HCBS-CES). CCBs are contractually required to provide access to telecommunication devices and/or interpreters for the hearing and vocally impaired and access to foreign language interpreters as needed related to those programs. Requiring CCBs to provide information in all formats about all programs that may be applicable and beneficial to a person with developmental disabilities is beyond the current scope of work and would require budgetary action to address new mandates.

 

RESPONSE BY PAD-CO TO STATE (CDHS) RESPONSE: The crux of the problem is not the provision of telecommunication devices or interpreters and the like, it is explaining clearly to families and individuals with disabilities the options available (or not) from a broad selection of choices, including the various waivers, the county mill levy funding, and state and federal programs  . Hopefully the choices presented extend far beyond the “system” into community involvement in programs such as recreation departments, paid options, free activities, new parent collaborative and the like. .Groups such as PAD-CO (Parents of Adults with Disabilities in Colorado) spend hours on the internet and in meetings discussing the intricacies of ever-changing state and local rules and regulations, regarding dental benefits, reimbursement and administration of CDASS programs and the SLS waiver and on and on.

 

Particularly vulnerable are families where the child with the disability is leaving the under-age-21 mandated programs of the school system, into the non-mandated services of adult programs, which has a myriad of differing and sometimes contradictory rules and regulations. We feel that the Community Centered Boards need to provide better guidance. We strongly suggest simplifying the system, reducing the frequent and always changes in regulations, and better training and longevity for case managers.  Also, an online computer program could be developed with CD’s/DVD’s. Here is a start http://www.coloradoresourcedirectory.net/


Additionally, the state should have clear, easy to read and interpret processes for anyone looking at the programs (including for those families looking to relocate to Colorado). Consistency and transparency should be the standard

 

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#17 - March 20th, 2012 Issues from PAD-CO

 

Thank you, Legislators, for passing HB 12-1177

 

“Concerning a grant program to provide home care allowance benefits to certain eligible individuals, and, in connection therewith, making and reducing appropriations.”

 

PAD-CO (Parents of Adults with Disabilities in Colorado) sincerely and gratefully thanks the Colorado Senate and House for passing HB 12-1177, which provides critical financial relief to over 240 families with children with disabilities.

 

Some of those who were vital to the creation and passage of this bill include:

As of this writing, we pray HB 12-1177 has been signed by the governor so it can take effect as soon as possible and start helping these desperate families.

 

Again, thanks so much to the Colorado House and Senate. Your actions are greatly appreciated

 

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#16, March 13, 2012, “Issues from PAD-CO”

Responses by PAD-CO to State Responses to Two of the Baker's Dozen Questions Posed by PADCO (#7, January 10, 2012)

Baker's Dozen Question #4 - Why do some Program Approved Service Agencies keep up to 40% of funds for administrative costs, reducing the amount available for services to individuals with disabilities?

RESPONSE BY STATE: The payment for services is based on a fixed rate, and the providers have discretion as to how much of that rate is reserved for administration. The Department and the Department of Human Services Division of Developmental Disabilities lack the regulatory authority to mandate negotiated contracting concerns between the program approved service agencies and their providers.

PADCO RESPONSE TO THE STATE RESPONSE: PADCO understands the fixed service rate approach and providers are currently able to set their own levels for administration costs. However, PADCO would encourage the State to consider alternative methods to ensure that the maximum amount of funds and services are available to the DD population, while also ensuring providers have the capability to earn a fair profit. One option to consider is the Federal government’s approach regarding administrative cost limitations in several of its programs. The Federal government many times limits administrative (or overhead) costs to 10 or 15%, thereby ensuring the maximum amount of funding is available to the citizens.

Baker's Dozen Question #7.- Why did the new “Money Follows the Person” grant spend $23,850 to develop a logo and a new name - “Colorado Community Transition,” a portion of their $70,000 for "marketing," when thousands of individuals with disabilities are on the waiting lists for critical services?

RESPONSE BY THE STATE: The Department received a planning grant from the Centers for Medicare and Medicaid Services (CMS) specifically for the purpose of helping with startup costs and development of marketing materials. The conditions of this grant did not allow for the use of this funding for services. The Money Follows the Person (MFP) grant was not used for the development of a logo and new name, and the full amount of the marketing portion of the MFP grant is still available.

As part of the conditions of the federal MFP program, the Department is required to have an outreach strategy to maximize awareness and enrollment. Without a good marketing strategy to maximize enrollment, Colorado could lose funding for the program. The Department believes that it was important to change the name because “Money Follows the Person” does not clearly state the purpose of the program and created confusion among providers and potential clients. By renaming the program, with input from clients and providers, the Department believes that it will generate additional interest in the program and allow for more clients to transition out of institutional care settings.

PADCO RESPONSE TO THE STATE RESPONSE: PADCO is appreciative of the clarifying response that no MFP grant funds were used to develop a logo and new name. However, the figure of $23,850 spent on the logo and name IS correct, the money must have come from somewhere, This emphasizes the critical need to assure that spending is always prioritized – first ALWAYS to direct services - and PADCO encourages the State to continue to seek ways to limit expenditures to necessary categories of costs so as to ensure every available funding is available for services to those most in need.

A small committee of interested citizens, including volunteer graphics services, could have designed the logo and created a new name, saving $23,850, which, by the way, would fund services for one individual with a developmental disability for one year under the SLS waiver. Unfortunately, that person is not funded and is without services, but we have a $23,850 new logo and name.

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March 6, 2012 - Issues from PAD-CO #15

 

Improving the Developmental Disabilities Delivery System; Two Suggestions

 

 PAD-CO respectfully suggests that the system/legislature:

 

 1. Implement an

 

 

external structural study of the entire Developmental Disability delivery system.  No, not one more internal study; there have been numerous internal studies and audits the past 5 years..  How do we know if the DDD/Community-Centered-Board structure, established “as is” 50 years ago, is the “best” system unless we measure and evaluate  the structure?  Does our current system structure provide us with  singular cost-effective administrative processes, utilizing the most modern technologies and efficiencies for financial and other controls?  How do we compare with other states and their very different systems?  We need to meet the needs of our individuals with developmental disabilities and their families utilizing highly efficient organizational management.  There should be no resistance amongst those striving for excellence to measuring and evaluating the structure of our current system.

 

2. Develop ways of electronically structuring methods for families, individuals, organizations and groups who can not attend numerous meetings and requests for feedback to provide input on an interactive, publicly viewable basis.  Many folks are providing extensive care for their child(ren) and family members and/or work full time, and simply can not make these meetings.  Input needs to be interactive and viewable.  Google and other internet programs may have some solutions for inter-active input. Has anyone ever calculated the amount of parent and consumer time requested for input into seemingly endless changes in rules and regs, waiver changes, advisory meetings, etc.? Are there some solutions to this?

 

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February 28, 2012 - Issues from PAD-CO #14 -

 

Killing the Golden Goose, Slice by Slice . . .

 

Dear Legislator:


Care of our children with severe and profound developmental disabilities is falling more and more on tired, worn out and exhausted parents and family members. Yet, since 2007. there have been continuous cuts in programs that were originally developed to support parents and family members in best performing these duties for their children with disabilities. The Golden Goose is being killed, slice by slice, and when these weakened geese are no longer able to carry these heavy duties, the entire developmental disabilities support system will further collapse.


Strangely, the supposed major support for families – the Supported Living Services (SLS) Medicaid waiver - has been the largest target of bureaucratic slicing. A sample of the cuts since 2007 follows:

Other major financially straining state DDD actions since 2007 include:

Additionally, the state has made it increasingly difficult to gain state reviews of the SIS, even in the evidence of marked changes in an individual's physical condition, and parent-requested reviews by the captive Administrative Law Judges are considered a waste of time by parents.


How long until the Golden Goose is sliced to death, and what happens when it is finally killed?

killed?

 

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#13 - February 21, 2012

 

Issues from PAD-CO #13- February 21, 2012 - Please support HB12-1177-
 
Dear Senator,

Please support HB12-1177, providing critical relief for individuals with developmental disabilities.

Dear legislator - We would like to thank the House of Representatives for their great support of HB 12-1177, and we strongly urge the Colorado Senate to support this bill and help those families and dire need right now.   This bill would create a grant program for individuals with Developmental Disabilities who were eligible for both an HCBS waiver, and the Home Care Allowance, as of 31 Dec 2011, correcting the terrible inequities of HB 10-1146

Based upon incomplete and incorrect information provided to the Legislature, the previous HB 10-1146 reduced markedly the funding available to hundreds of individuals with profound and complex developmental disabilities (with many requiring 24 hour one-on-one care), and their families. This bill would have forced these families to make a terrible choice of losing their Medicaid waiver (Supported Living Services [SLS] or Children's Extensive Services Waiver [CES]) and the state funded Home Care Allowance (HCA). The loss of either the waiver or the HCA would place some of these individuals below the poverty level and many near the poverty level. As a result, many families would not be able to adequately provide the critical in-home and other services needed by their family members with disabilities. At the same time, the funding for the SLS waiver was markedly reduced, further compounding these circumstances.

The fact that HB12-1117 is before the legislature was due to the key effort put forth by Rep. Dave Young, in particular Dave's organizing two parents to testify before the JBC and the House.

Senators, please support this bill!!

 

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#12 - February 14, 2012

Thank you Colorado Legislator on this Valentine's Day

The members of PAD-CO would like to thank all Colorado legislators for their hard work and support of legislation that assists individuals with disabilities of all types and their families to be more independent.

 

We know you are busy and have many demands on your energy and time, and we greatly appreciate your efforts, and especially your caring.

 

Happy Valentine's Day to you all!

 

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February 7, 2012

 

Let's talk about a wasted $38 million in Colorado
 
The Federal Medicaid matching funds program has $38M in funds available to Colorado, which could be used to match the County "disability mill levy funds" collected by Denver, Jefferson, Arapahoe, Douglas, Larimer and Boulder counties as well as the money appropriated for North Metro Community Services by Adams County.
 
Over the past several years, PAD-CO (Parents of Adults with Disabilities in Colorado) has suggested that the State disabilities delivery system attempt to use this $38 million available through matching federal Medicaid funds to do just that. In effect it would increase the available money for DD services by $38M. There is Colorado legislation authorizing this process.The state DDD/HCPF has prepared a detailed manual as to how this can be accomplished. Procedures are in order for using these additional funds.
 
Instead, almost all of the $38M in county-collected mill levy funds is forwarded by the counties to the CCBs (Community Centered Boards) in the respective counties, and therefore is not currently matched by federal FMAP funding. The CCBs have countered that they use the county mill levy funds for special purposes that are not an option under the Medicaid rules. They have also argued this to their respective County Commissioners and state legislators. 
 
Other states already have their county mill levy funds matched by the FMAP program. PAD-CO has suggested a trial program of less than a million dollars, but has had no success in convincing the CCBs and County Commissioners of even a trial program for this opportunity. Likely, in order to effectively gain the use of these funds, legislative action will be required. Specifically, we suggest the following change of “may” to “shall” and the addition of “10% OR MORE” in CRS 27-10.5-104.5, which would read as amended:
 
“ . . . a county may SHALL transfer 10% OR MORE OF the revenue raised pursuant to the mill levy to the department of health care policy and financing or the department of human services to receive matching federal funds to provide medicaid-approved waiver services to persons with developmental disabilities.”
 

Why is Colorado missing out on $38 million in these critical funding times?

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January 31, 2012

 

#10 -   PAD-CO Resource Parents and Family Members Who Would Like to Communicate with You

 

Parents in PAD-CO (Parents of Adults with Disabilities in Colorado) have a difficult time meeting with legislators and attending hearings. Services to many of our children with profound disabilities and their families have been severely cut, leaving us with little time and money.

 

Unlike some organizations, we have no money for lobbyists or Executive Directors.

 

However, we have a GREAT interest in communicating with you and answering your disability-related questions. Therefore, we have set up a phone and email contact list of knowledgeable parents and family members who can either answer your questions, or will find the answer. They would also be pleased to discuss with you their particular situation. Please keep this list for use during the legislative session.

 

We strongly encourage you to contact any of the following for questions, information or to learn about their own situation.

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January 24, 2012

 

#9 - Is compensation of $437,023 to $74,475 appropriate for our Community Centered Board Executive Directors?

 

Colorado has 20 regional state-mandated (CRS 27-10.5) quasi-governmental 501c3 “Community Centered Boards” who provide Case Management and some community services to individuals with developmental disabilities.

 

Salaries for the Executive Directors are set by the Board of Directors of each Community Centered Board.

 

PAD-CO strongly believes that salaries + benefits should be appropriate, no matter the source of the salary + benefit funding.

 

So, in this time of extreme cutbacks in services to individuals with developmental disabilities and their families, are the Executive Directors of these quasi-governmental 501c3’s being paid appropriately? Here are the salaries + benefits for each Board Executive Director, sorted by the amount paid for FY 2009. The figures are taken directly from the latest IRS 990‘s filed by each CCB.  These figures do not represent FY 2011-2012 salaries + benefits, which may be higher or lower.

 

Denver Options - Denver County
$437,023

Denver Options has requested that we include the statement that "No Govt Funds Used."  Please contact them for funding details.

 

Developmental Pathways - Arapahoe / Douglas Counties / Aurora
$240,977

 

Developmental Disabilities Resource Center - Jefferson / Summit / Clear Creek / Gilpin Counties
$215,796

 

Starpoint - Chaffee/ Custer / Fremont Counties
$203,136 (filed amended 990)

 

North Metro Community Services - Adams County
$200,230

 

The Resource Exchange - El Paso / Park and Teller Counties/Colorado Springs
$188,859

 

Imagine! - Boulder / Broomfield Counties
$174,154

 

Mesa Developmental Services - Mesa County
$157,698

 

Foothills Gateway - Larimer County
$147,479

 

Mountain Valley Development Services -Eagle / Garfield / Lake / Pitkin Counties
$142,074

 

Southern Colorado Developmental Disabilities, Inc./Las Animas County Rehabilitation Center, Inc - Huerfano / Las Animas Counties
$116,736

 

Horizon Specialized Services - Grand / Jackson / Moffat / Rio Blanco / Routt Counties
$104,397

 

Community Options, Inc. - Delta / Gunnison / Hinsdale / Montrose / Ouray / San Miguel Counties
$101,135

 

Envision - Weld County
$91,979

 

Arkansas Valley Community Center -Crowley / Otero / Western Bent Counties
$87,858

 

Colorado Bluesky - Pueblo County
$87,850

 

Eastern Colorado Services for the Developmentally Disabled, Inc - Cheyenne / Elbert / Kit Carson / Lincoln / Logan / Morgan / Phillips / Sedgwick / Washington / Yuma Counties
$86,180

 

Community Connections - Archuleta / Dolores / La Plata / Montezuma / San Juan Counties
$81,738

 

Southeastern Developmental Services, Inc. - Baca / Eastern Bent / Kiowa / Prowers Counties
$78,649

 

Blue Peaks Developmental Services, Inc - Alamosa / Conejos / Costilla / Mineral / Rio Grande / Saguache Counties
$74,475

 

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January 17, 2012

 

#8 - The Risk of Colorado’s Fragile System of Supports for People with Disabilities
 
A parent with a full-time business illustrates the difficulty, complexity and fragility of medical care, services and supports for adults with disabilities in Colorado.
 
To be independent, my 29 yo son with a disability lives in his own apartment receiving $674 per month from SSI and very limited services through the DD Supported Living Services (SLS) waiver and other systems such as SNAP, LEAP, Voc Rehab and Medicaid, all requiring complex applications and reviews.  He has been unable to get a suitable and close-by housing voucher,
 
One or all of these systems breaks down regularly, requiring my immediate attention away from my business to protect his health and well-being.  For example:
 
* SSI stopped his benefit 3 times in a row, with minimal notice, because of their mixup in his address, which meant the rent could not be paid.
 
* With three medical problems that required urgent attention, I couldn’t get appointments with his Medicaid doctor twice and had to go to the ER, sometimes spending 10 hours with no resolution. 
 
* When our DD service providers don’t show up it causes great anxiety for my son, threatening his health and safety.  As the recruiter and trainer, to replace a provider means that I have to take several days off of work.
 
* A noise problem at the only close apartment we could financially manage almost caused his eviction.  I had to drop everything to convince the apartment complex to let him stay.  I tried to get him on the emergency waiting list for HCBS-DD, but they told me he had to be homeless to get on it.
 
* His specialist doctor recently dumped all of his Medicaid and Medicare patients, sending.  us a list of other unknown doctors, requiring a call to each doctor to see if they would take Medicaid and knew how to treat my son‘s very rare condition.
 
My purpose is to demonstrate that for me, the system is broken and the lives of people like my son with disabilities are so fragile.  I cannot even imagine what my son would do without my help on all of these things.  I handle all of his finances, contracts, doctor appointments, transportation to appointments, etc.  When I am gone, will this broken system keep him off the streets?  I doubt it.

 

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January 10, 2012

 

# 7 - A Baker's Dozen of Questions from PAD-CO Participants that Need Answering

A Baker’s Dozen of common-sense questions that seem to have no answers

1.  Why do I get 3 paper notices a month (all with postage) for each person on Medicaid in our family stating that (a) their Medicaid has been approved for the month; (b) stating the appeal rights to letter A; (c) stating the HIPPA regs?

2.  Why can't I address questions about Medicaid, including replacing Medicaid cards, via a website? The feds let me file my taxes and apply for social security via a website - so surely there is a way to do this confidentially. Instead I am placed on hold for over an hour and then cutoff!

3.  Why is there no mechanism for purchasing perfectly fine used equipment - consumer option? Medicaid is paying for a new shower chair when the one that we want is on Craig's list for $800! Why can't a dealer purchase it, have an RT examine, rehab if necessary, and determine that it is appropriate for the individual? There are garages full of out-grown and dead people's equipment. Create an incentive for people to return the equipment.

4.  Why do some Program Approved Service Agencies keep up to 40% of funds for administrative costs, reducing the amount available for services to individuals with disabilities?

5.  Why doesn't Medicaid send the consumer a monthly statement of charges made for medical services -- as Medicare does?

6.  Why is no data on the number of denials for mental health services for people with DD and mental illness? Most people only get verbal denials so there is not a paper trail to determine how many people receive denials and there is no way for people to appeal the denial

7.  Why did the new “Money Follows the Person” grant spend $23,850 to develop a logo and a new name -  “Colorado Community Transition,” a portion of their $70,000 for "marketing," when thousands of individuals with disabilities are on the waiting lists for critical services?

8.  Why don't CCBs ensure that all clients and their families/guardians have ready access, in various formats, to easily understood info about the various programs that may be applicable and beneficial to their daily lives?

9.  Why does Medicaid refuse to pay for life-saving "orphan" drugs when it is prescribed by a physician and is known to successfully treat rare conditions; thus saving Medicaid the cost of weekly emergency room visits?

10.  Why does the State of Colorado perpetuate myths about popular (recently cost-restricted) programs that many, if not all States, have adopted as an option in their States 'Medicaid Long Term Care Options program' and yet it's OK to have CDASS for the Elderly, Blind, Disabled, the MI (mental illness) and BI (brain injury) waivers, so long as they're not Developmentally' disabled? Why are families of adults with developmental disabilities or the individuals themselves not qualified to self direct their care?

11.  Why isn't there a vetted list of Medicaid doctors that parents can easily get?

12.  Why isn't there a Medicaid program that is designed to help people with DD  to lose weight and get healthy?

13.  Why is it so difficult for a person with DD to get a housing voucher... AND ... why are there so very few housing options in safe neighborhoods for people with DD? And .... why isn't there a master list of landlords that accept housing vouchers?

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#6 - January 3, 2012

 

Building a Report and Proposed Program on Quicksand

The statewide organization, the Alliance (composed of 15 Community Centered Boards and about 15 Developmental Disability Service Provider Organizations), has completed a Focus Group report regarding the status of disability services in the State of Colorado.  This report forms the foundation of a further “Final Report of the Alliance Focus on the Future Project.”   As the primary basis of the Final Report, it is critical that the Focus Group Report and process be exemplary.  It is not. The critical errors in the report methodology poison the further Alliance Final Report results.

Please see the entire Focus Group report at:
http://www.alliancecolorado.org/images/stories/3b-FocusGroupReport.pdf

Most unfortunately, the Focus Group report contains critical procedural errors and statements which negate the accuracy of its findings and applicability, Specifically, the report:

 

1.  Used the "Focus Group" technique inappropriately - it was not meant for this type of research.

2. Claimed that the participants in the focus groups were “representative of the designated region;” and

3. Recruited people for the focus groups who were “unlikely to polarize others (sic) participants”

PAD-CO (Parents of Adults with Disabilities in Colorado) has had the report and statements above reviewed by focus group practitioners and experts, and have received the following comments (in italics):

1. In regards to the use of focus groups for this type of “research”
.
Using a well-known reference book Merton, R.K., Fiske, M., & Kendall, P.L. (1956).
The Focused Interview: A Manual of Problems and Procedures. New York: Free Press, as a backdrop, an expert indicated that

."Most research methodology geeks that I know of believe that Merton’s original intents were legitimate, but that the method has since been expanded to absurd dimensions – to try to do things that the method was never designed or intended to do."

“I think the report [the Alliance Report] in question is such an instance.


2. In regards to the report’s listed criteria for choosing participants - Criteria #1. - Representative of the designated region;

An expert commented:“Item 1 is, to me, utterly unjustified and unjustifiable. Only strict valid sampling theory can guide one to be “representative” of the designation region.

Another expert commented:

Focus groups are a qualitative method that must never claim to form a representative image of any larger group phenomenon. Yet the stated selection criteria in the report seem to claim that, right off the bat: Instead, a focus group should be seen as a completely non-representative 'sample' intended only to expand the range of issues to be explored. It is a tool to help researchers think of things they haven’t yet thought of, things they can investigate more deeply with better methods."

3. In regards to selecting out “polarizing participants” - Criteria #4

Expert comment:

"Item 4 is bizarre, in that it automatically excludes participants who are “outliers.” And one of the primary purposes of focused interviews is to learn more, to uncover things we haven’t thought of. Excluding the extremes, even if they polarize, seems to me to contradict the most fundamental purpose of the entire approach. It suggests a fundamental misunderstanding (on top of the usual error of assuming findings represent some larger population)."

We believe further Colorado disability studies are needed which comply with the basic understandings of research methodology and theory, which do not "filter" participants, which provide appropriate sampling techniques and which recognize the limitations of Focus Group research and its proper applicability and lack of applicability to large populations.

This flawed focus group project and results should not form the major basis of the Final Report of the Alliance Focus on the Future Project.

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December 27, 2012

 

# 5 - Results of Citizen Requests for CCB Information Vary Markedly by Location 

Information just depends on where you live!!

Colorado has 20 quasi-governmental 501c3 Community Centered Boards (CCBs) authorized by CRS 27-10.5 to provide case management, residential services, early intervention, day programs, family support and other services to individuals with developmental disabilities and their families. They annually process hundreds of millions of dollars in billing for Medicaid and State funds.  

 

There have been concerns by citizens with the amount and type of information available from these state-authorized quasi-governmental agencies, which varies markedly from CCB to CCB. 

 

In June, 2010, a request was mailed by PAD-CO (Parents of Adults with Disabilities in Colorado) to these 20 CCBs.for the following records and information (or a link/URL to the information):  

 

1. Line item budget for FY 2009-2010 and FY 2010-2011

2. Salary/benefits by name for individuals earning over $50,000

3. Minutes for 2009/2010 of Board of Directors and Executive Committee

4. A process whereby a citizen could share confidential concerns with a Board member without the knowledge of the Community Centered Board.

5. A copy of the By-Laws.

6. The most current annual line item expenditure report for all publicly funded programs.

 

A follow-up letter verifying accuracy of submitted information was sent to the CCBs November 8, 2010

 

Responses by CCBs to the PAD-CO letter varied markedly, meaning that a citizen residing in the “catchment” boundaries of some CCBs (generally several counties) could get all the information requested, while a citizen residing in the boundaries of other CCBs - sometimes a just-across-the-street boundary - could get little to almost no information

 

Below are some CCBs that (as of January 10, 2011) provided complete or almost complete responses.

 

Mountain Valley (Glenwood Springs)

Blue Peaks (Alamosa)

Envision (Evans)

Developmental Disabilities Resource Center (Lakewood)

Colorado Blue Sky Enterprises (Pueblo)

and others

 

Some CCBs provided very little information.  

 

The responses  (as of January 10, 2011) for your CCB and all the other CCBs have been summarized in a color-coded chart. Green means that the CCB responded with the requested information. Red means that they did not respond to the PAD-CO request. Light blue means they partially responded.

 

Please view the chart of your and all CCBs, and the letters that were sent at:

 

http://www.ourwebs.info/ccbletter.htm

 

It is remarkable and worrying that there is so much variability in citizens gaining information from one CCB to another about the use of state and federal funds. Encouragingly, some CCBs have followed PAD-CO’s suggestion that they post this information on their respective web pages.  

 

PAD-CO believes that a citizen should  be able to get similar and complete information no matter in what CCB boundaries they reside.

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#4 - December 20, 2011

 

The allure and fallacy of "Natural Supports" to provide services to those with disabilities


It is increasingly common for professionals and policy makers in the disabilities field to tout "Natural Supports" in place of paid assistance to provide services to those with disabilities, in a hope of reducing expenditures. Their belief is that there are neighbors, relatives, family members, churches, community organizations and the like just waiting to help individuals with disabilities.

 

A national survey , "Final Results of the National Natural Support Survey"

 

http://ourwebs.info/naturalsupportmain.htm

 

with 491 respondents, completed in April, 2011, shows this belief to be an invalid assumption.

 

Overall, 66% of respondents reported that they had little, miniscule or no natural supports, while 34% indicated moderate or strong natural supports. Of those who had natural supports, the most frequent responses were immediate family and friends, while the least frequent responses were neighbors, church and social groups.

 

From 100’s of written comments, one respondent stated:

 

"Most natural supports run like hell when they see you coming, avoid the phone when you are on the other end, or pretend not to hear the door when you knock. Our child is a handful to say the least, they wear us out in no time at all and we are supposed to be 'used' to it. What do you think the parent who is not accustomed to it feels like? In thirty minutes they are watching the clock tick by and biting what is left of their nails off, waiting for you to get back. Paid respite is hard to find, free respite is almost unheard of. It takes a very special family member, or other 'natural support' to be there and be there often. It's a hard job, we try not to complain often, but when you cut an already short budget it makes one angry!"

 

while another parent of a son with much lesser needs, stated:

 

"My son is now 20 with high functioning autism. After becoming a single parent when he was four, I had to develop a strong network of support for him. A good example of one of his natural supports now is that he had an internship last school year. When summer came, they asked him to stay on. Since he had no transportation, he asked a co-worker if he could carpool and gave her money weekly for gas. And they liked him so much they extended his job through this school year too."

 

The survey responses indicate that those individuals with disabilities who were younger and with less demanding care were more likely to have natural supports, while as folks aged or had more demanding care needs there was less success in gaining and using natural supports. As a result of funding and support cuts, tired, worn out and stretched families are providing more and more services as the only "natural support" available to many individuals with a disability.

 

As natural supports are neither consistent nor guaranteed, using "natural supports" as a care model or adjunct care model is not appropriate except in the most unusual situations.   One of the questions we ask policy makers and professionals when we are in meetings where the use of  "natural supports" is being advocated is, "How many of you are providing respite or natural supports to a family or someone with a disability?"  So far, no one has answered "I am."

 

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#3 - December 13, 2011

 

Daily Schedules of families of adults with disabilities.

 

This week, we are presenting 6 daily schedules for the "live-at-home" adult children and a spouse of families with adults with disabilities in Colorado (PAD-CO). On this page are excerpts from these schedules. Please click on the link following the story to read the daily schedule for that family.

 

Daily Schedule #1 - Adult daughter, age 23

“Midnight – 5 am: intervention 3 to 8 times per night (e.g., provide pain medication, reposition, diapering, all night g-tube feeding)” Read more . .

 

Daily Schedule #2 - This mother is in her 50's.  Her adult son is 23.

“Flush catheter. Clean catheter site. Change diaper. Disconnect from drainage bag. Wrap g-button with an absorbant. Remove pajamas. Put on clothes. Transfer to wheelchair. Clean face. Put on deodorant. Comb hair. Put on face cream. Make bed. Brush teeth. Medications given.” Read more . . .

 

Daily Schedule #3 - This is a wife's report about her husband.

“All Shifts Require Continuous Medical Monitoring of His Ventilator/Breathing 8am-10:30 am. Suction trach. Take down equipment (O2 compressor, ventilator, feeding machine, wheelchair charger, night bag)” Read more . . .

 

Daily Schedule #4 - This single mom of her 18 yo adopted son lives in the northern metro area.

“He comes out of his room again in his diaper although he knows you do not walk around in your diaper with no pants. I tell him to cover himself up from bedroom to bathroom.

 

At least it is better than when he used to walk into the living room naked. He jumps up and down (5’10 and 145 lbs). saying “it is not fair.” Read more . . .

 

Daily Schedule # 5 - Their adult son is 23 yrs old.  She and her husband are 58 and 57 years old

“First, here’s where the night before left off. He has fallen asleep somewhere on the floor around the house, so we have to put him in his wheelchair and put him in bed at the time we’re going to go so as not to wake him up. So, we don’t have the freedom to stay up after he goes to bed…and that means we’re putting him to bed at 11 pm or 12 am. And, he is restless throughout the night. We have a monitor in our room so we can get up at a moments notice. He can’t be left out of sight for any length of time” Read more . . .

 

Daily Schedule #6 - Behavioral challenges are extremely difficult

“You could have a perfectly fine day one day and the next day, you are calling the police and doing an ER run.” Read more . . .

 

Thank you for taking the time to read these daily schedules.

 

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#2 - December 6th, 2011

Is the Disability Delivery System Being Redesigned Backwards?

The Colorado Department of Human Services (CDHS) and Health Care Policy and Financing (HCPF) are considering moving the Division of Developmental Disabilities (DDD) from CDHS to HCPF, along with other changes..
 
Parents and families with an individual with developmental disabilities (IWD) who are seeking services have extreme difficulty navigating their way through a tremendously complex bureaucracy of disjointed services. For example:
 
•  IWD’s are evaluated as to need by the Supports Intensity Scale, which gives inconsistent results from location to location and evaluator to evaluator, and fails to consider the differences in supports and resources available from family to family..
 
• Families must evaluate, choose and apply for one of many different and complex waivers, housed in two completely different state departments, CDHS and HCPF, with entirely different application processes.
 
•  Applications must be completed to other agencies for Home Care Allowance and other programs.
 
•  Families must learn about, understand and apply for programs such as CDASS (Consumer Directed Attendant Support Services) and Family Caregiver Act (FCGA).
 
•  Other programs requiring education and application are county mill levy funds, Section 8 housing, SSI, sometimes SSDI, the Colorado State Medicaid Plan and many others, each through different processes and agencies..
 
Parents travel from agency to agency, each with incomplete and sometimes inaccurate information, and discuss endlessly the complex programs on listservs and in meetings.  All this leads to waste of money in the system and tremendous aggravation  and waste of time and energy for families, parents and individuals with disabilities.
 
Yet, some states really do have a seamless system where parents and families can find out all they need to know with one-stop services, and apply in one place. They have knowledgeable case managers who are well-trained and caring.
 
We are concerned that the state agencies are not looking at models of excellence in the country prior to making changes in our convoluted system.  We pray they are not simply rearranging the chairs on the Titanic.
 
Please help us insure that proposed changes to the Colorado system are based on the best available models and examples.

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#1 - November 29, 2011

The unforeseen terrible effects on individuals with disabilities and their families of HB 10-1146 (State-funded Public Assistance Programs)

Based upon incomplete and incorrect information provided to the Legislature, HB 10-1146 reduces markedly the funding available to hundreds of individuals with profound and complex developmental disabilities (with many requiring 24 hour one-on-one care), and their families. This bill has forced the families to make a terrible choice of losing their Medicaid waiver (Supported Living Services [SLS] or Children's Extensive Services Waiver [CES]) and the state funded Home Care Allowance (HCA). The loss of either the waiver or the HCA will place some of these individuals below the poverty level and many near the poverty level. As a result, many families will not be able to adequately provide the critical in-home and other services needed by their family members with disabilities. At the same time, the funding for the SLS waiver was markedly reduced, further compounding these circumstances.

Several Colorado legislators are currently working extremely hard to find solutions, including possible legislation and/or administrative remedies. They have been in contact with many of the affected families and understand the situation. The reduction is scheduled to start January 1, 2012.

We ask your assistance in resolving this critical, vexing and complex problem.

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