Disability Community Presentation to the Joint Budget Committee --December 17, 2013

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Disability Community Presentation to the Joint Budget Committee


December 17, 2013









Disability Community Presentation to the Joint Budget Committee







Julie Reiskin

Executive Director

Colorado Cross Disability Coalition


Darla Stuart

Executive Director

Arc of Aurora



Robin Bolduc

Family Member

Member/Colorado Cross-Disability Coalition


David Bolin Executive Director Accent on Independence

Representative of CLASP (IHSS Provider Assn)


Bonnie Silva

Home and Community Based Services Program Manager

Department of Health Care Policy and Financing




./ Requests from the Disability Community

./ Legislators Guide to Assess True Consumer Direction

./ Picture of Robin Bolduc and Bruce Goguen (CDASS Client)

./ Acronym List

./ Participant Directed Programs Policy Collaborative (PDPPC)

./ Data Handout

./ Agency Based Services for SLS Client-dollars billed versus services provided

./ Service Plan for SLS Client "Tiffany" with Picture

./ Josh Winkler Testimony and Picture


./ IHSS Letter to DORA with Picture of IHSS Client



Disability Community Requests:


1)  Consumer direction works and because it works it is now a buzzword.  In your packet are five questions to ask to assure that when people say something is a consumer directed program that it is -please ask these questions not just for this, but for all disability related programs and for all human services programs.

2)  We would love you to require that HCPF submit a definite timeline to get CDASS and IHHS in all waivers. This cannot wait until waiver modernization or full long term care reform. Because this is implementation of a promise made by the GA to the community ten years ago, we think requiring a timeline to be submitted to you before the 2014/2015 budget is finalized with completion no later than 7/1/15 is more than reasonable. Asking without imposed deadlines has not worked.

3)  Work plan for full consumer direction by year end. Some programs such as SLS

will not work unless we have full consumer direction.

4)  Finally, we hope that you will strongly support the department's commitment to use PDPPC as THE policy making body for all consumer direction programs.



We appreciate your time and support and can answer questions


Legislators Guide to assess if an idea is true consumer direction:



I) Is the governance of the program (policy making committee if government or Board of Directors if non-profit) made up of a majority of people that use the program, service or benefit? EXAMPLE: PDPPC has a requirement that more than 50% of the voting members must be clients of the program. This is different from having one or even several representatives appointed by an outside body.

2)  Do clients of the program have the ability to hire and/or fire and supervise direct care workers? EXAMPLE: Client can refuse to hire smokers if they do not like smell of smoke. A client who is a devout Christian can hire from within her faith community, a gay client can refuse to hire someone that is homophobic, etc.

3)  Do clients of the program have budget authority? This is NOT giving clients a

blank check or allowing a client to dictate the amount of service, but is assuring that once an amount is determined (hopefully based on needs), that the client can control how the funds are used within the specific parameters. EXAMPLE: When hiring a personal care provider, the client can determine how much to pay

per hour, and pay different people different amounts based on factors important to the client. Client can increase wage to get better quality for fewer hours.

4)  Do clients of the program directly supervise the staff that provides supports? This includes determining what hours are worked, where the work happens, and what is done during the workday. Even when a provider is to help with cueing or

"supervision," the client is always seen as and treated as the boss. EXAMPLE:

30 year old client needs assistance getting in and out of bed and can go to bed at

II:00 p.m. most nights. Client may schedule worker for a bedtime visit at 2:00 a.m. on the occasional night out. The client would not have to justify where they were or why they wanted to stay out late. EXAMPLE:  Client decides to use hours one day to have worker help her clean the closet out instead of doing exercises as they usually do.

5)  Does the program support clients to do run their lives however they choose.

EXAMPLE:  If faith is important to the client, will the support enable a client to

attend services and participate in other faith based activities? If career is important, can the client receive supports on the job and assistance to get and keep a job -even if job has varying hours or requires travel? This does not mean that the program or state must provide these opportunities; just that services need to not interfere with someone seeking their own opportunities).



If there is not a 'YES' answer to each, the program is not true consumer direction. Some programs may be good and have partial consumer direction and policies should be changed to move the needle towards full consumer direction.


Picture of Robin Bolduc and Bruce Goguen (CDASS Client)




»  CDASS Consumer Directed Attendant Support Services (Medicaid delivery option that enables clients to control personal care, homemaker and health maintenance/home health services).

»  HCBS Home and Community Based Services.

»  HCBS/BI (Home and Community Based Services for People with Brain Injury).

» HCBS/EBD (Home and Community Based Services for Elderly Blind and


)iii>      HCBS/SCI (Home and Community Based Services for People with Spinal Cord Injuries)- Pilot program to test provision of alternative health care services such as acupuncture).

)iii>      HCBS/SLS (Home and Community Based Services Supported Living Services) A Program for people with developmental and intellectual disabilities that does not provide 24 hour care. The program that DOES provide 24 hour care is referred to as COMP for comprehensive services.

)iii>      1/DD (Intellectual or Developmental Disabilities): Refers to people with

disabilities that require lifelong supports, whose disabilities appeared before age

22: In Colorado this also means that person must have a cognitive disability

)iii>      FMS (Fiscal Management Service): A company contracted with by state agency to provide ancillary services to clients using consumer direction. In Colorado this includes payroll services, background check, other employer related services such as the intermediary for unemployment, workers compensation, etc. In Colorado they also provide the client training component.

)iii>      IHSS (In Home Support Services): Medicaid delivery method for the same

services as CDASS with supports provided by an agency.

)iii>      HCPF (Health Care Policy and Financing): The Single State Agency in charge of all Colorado Medicaid programs.

)iii>      HMA (Health Maintenance Activities): Services that would require a certified

nurse assistant or actual nurse if provided through a traditional home health agency.

);;>       HMK (Homemaker Services) such as cleaning a house, laundry, and meal


)iii>      LTSS (Long Term Services and Supports) formerly called Long Term Care or

LTC. The array of services and supports provided to people that require assistance with activities of daily living due to any sort of functional limitation (cognitive, behavioral, physical, illness, age, etc.). LTSS can include medical and non­ medical and LTSS is aimed at improving or maintaining function, not curative. LTSS are usually required for the life span of the client.

)iii>      PCP (Personal Care Provider): but acronym used to describe personal care services. Definition changes depending on which waiver (EBD/SLS, etc.), but

generally refers to what Colorado mistakenly calls unskilled services. These are services that do not require a certified nurse assistant.

»  PDPPC (Participant Directed Programs Policy Collaborative): The group that is

used by HCPF to make policy (both proactive and responsive) on all consumer

directed programs.

Group also used to advise department on operational issues as appropriate such as development of training, use of forms, and how these programs interface with the broader LTSS system.

);;>     PWD (Person with Disability or People with Disabilities): We also use the term

'"the disability community," which means the community of people with disabilities who actively identify themselves as such, usually those active in some sort of organization including faith based, cultural, social, or political. When we say '"the disability community" this generally means that all of the known disability controlled organizations have agreed on a concept.The organizations that are often included in this catch all group include, but are not limited to:

);;>     CCDC (Colorado Cross Disability Coalition): A statewide disability rights organization run by and for people with all types of disabilities (Cross­ Disability). CCDC often acts as a convening organization to bring together organizations that are either local or disability specific. Most of the leaders of the organizations described here are CCDC members.

);;>     ADAPT National grassroots disability rights organization- Used to be American Disabled for Accessible Public Transit (Denver is famous internationally as the birthplace of this movement) then was American

Disabled for Attendant Programs Today -and is now simply ADAPT (www.adapt.org).

);;>     Arc Chapters (there are several chapters throughout the state and a state Arc


);;>     IL (Independent Living) Centers or Centers for Independent Living - there are

10 IL Centers in Colorado and they are state certified to provide advocacy, peer counseling, information and referral services and independent living skills training. They all must provide an additional two services and most provide nursing home transition services. They must be community based organizations and must have a board and staff composition that is a majority of people with disabilities.

);;>     Parent Organizations including Family Voices of Colorado, Parent to Parent of Colorado and PADCO (Parents of Adults with Children with Disabilities).

);;>     The Legal Center for People with Disabilities and Older People.


We often work with allies and supporters such as disease specific organizations like the MS Society of Colorado, and provider organizations such as Personal Assistance Services of Colorado (PASCO) or Ability Connections of Colorado (Formerly UCP). We also

work with legal organizations such as the Colorado Center for Law and Policy and

Colorado Legal Services.


PDPPC Description:


The Participant Directed Programs Policy Collaborative (PDPPC) is a stakeholder/department meeting that replaced the Consumer Directed Support Services Advisory Committee in January 2012, following a disability community presentation to the Joint Budget Committee where it was agreed that a stronger client voice was needed in the management of these programs. The PDPPC is where consumer direction clients, employees and advocates work with the Department and their contractors on all policy issues related to consumer direction programs.


2013 Accomplishments:


)il>        Expanded CDASS into the BI Waiver.

)il>       Revised the physician form to clarify and cut in half paperwork for physicians.

)il>      Advised the department on elements essential to re-procure the FMcontract.

)il>       Advised the department on a protocol for temporary revisions in allocations for crisis (such as surgery recovery periods).

)il>       Provided the department with guidance so they could begin to develop better training to help case managers with allocation development.

)il>       Finished implementing a successful allocation management protocol to assure that no clients can exceed their allocation.

)il>       Provided comment to DORA and HCPF on IHSS improvements needed -led to

clari.fication an.d.reduction  of one bureaucratic obstacle removed related to nursmg supervision.

)il>      Department started to look at data for these programs via collaboration between a participant with data expertise and a HCPF employee in the data section. This was presented at a national conference.


Issues yet to be addressed:


)il>       IHSS issues are largely not addressed. IHSS clients cannot receive services in the community, have no budget authority and are not allowed to hire spouses.

)il>       IHSS is not available statewide.

)il>        Department data is not complete, does not account for several important factors and cannot measure cost avoidance.

)il>        CDASS is not available in SLS or Children's waivers. It was to be made available

in all waivers as of2005.

)il>        CDASS is in the state plan but the department has not allowed it to be used in the state plan- allowing this could solve many problems and address needs for

people on the DD and children's wait list.

)il>       There has not been movement towards consumer direction of other HCBS


)il>        Health Insurance for workers has not been addressed. At this time the department

has taken the position that it is not a business expense of the FMS, but should be a complete state responsibility, or that the model should be changed to make it appear on papr that each client is their own employer. Large business has been given a reprieve until2015. The PDPPC has not been given the data we need to

make an informed decision on whether or not it would be in the employee's best interest to have employer based insurance or to have each employee go through the exchange. Moreover, if the FMS decides not to insure workers that work more

than 30 hours a week HCPF believes that the contract requires Colorado taxpayers

to foot that bill.

)il>       PDPPC has not been given adequate cost breakdowns to explain the fee of $310 per client per month for the FMS services.


Issues in progress:


)il>       Training on consumer direction philosophy and disability culture to be provided to HCPF LTSS Staff first quarter 2014 (this is not directly connected with PDPPC, but relevant).

)il>      Working on developing training to help case managers improve their interviewing skill to use guidelines appropriately and to document variances maintaining a balance between flexibility and accountability.

)il>       HCPF has a grant to have a workgroup design a new assessment tool that will also

help define the development of a service plan. PDPPC members will be actively engaged in this process and this should help with better allocation development and create consistency in service planning across delivery methods. PDPPC believes that the amount, duration, and scope of services should be based on needs and should not differ based on the delivery method. All too often the service plan is based on what agencies can provide, not on the need of the client.

)il>      New FMS contract will be bid in 2014 and PDPPC is working with HCPF to make improvements.

);l>      Applications for employment (for attendants) have some electronic functionality;

we need to finish this so an application can be submitted completely on line.



Colorado: Time to get serious about Consumer Directed program services Data

Data must be used to determine fact from fiction in the development or reassessment of all policy and programs for persons with disabilities. Colorado collects a huge amount  of data about Medicaid programs and how people use those programs.  That data could be used to provide objective  and valuable information to support best practices, policies and programs regarding Colorado's consumer directed programs.

Graphic of Bart Simpson in detention, writing on the chalkboard: "I will adopt best practices."



However,Colorado's data collection has not been used to its fullest potential and, unfortunately,has only produced  reports that segregates the cost of long term care service delivery for some of Colorado's most expensive programs and people to serve as opposed to a thorough and accurate reflection of the total cost to serve people with disabilities in all aspects of their lives.


In a 2005Best Practices for Consumer Direction report  prepared by M.edistat for CMS it was stated that nearly all of the analyzed treatment groups participating in consumer direction had higher per onal care costs that were eventually  mitigated by lower costs for other Medicaid services such as acute or nursing home care.

Further the report indicated that the largest reductions in consumer directed Medicaid long term care costs were found when the broadest Medicaid and Medicare  population had access to the option of consumer direction. The big take away message was that data collection associated with the cost and human effectiveness of consumer direction must consider the cost to serve the whole person including acute medical, long term support, ancillary supports to determine the actual cost and cost savings.

Graphic of the word "FACTS," under a magnifying glass.


Colorado deserves policy and programmatic changes that are based on factnot fiction. In fact, changes in policy or programs that are not based on data is the cause of most program failures.  Consumer direction programs must be assessed through data first,policy and program proposed changes second!



Please consider requesting that the department compile the historical and forthcoming data to include the expenses associated with supporting the whole person and to expand the options to all Medicaid programs.

Darla Stuart  -- dsarcaurora@aol.com -- The Arc of Aurora - 720.213.1420

Prepared for Colorado Joint Budget Committee-- December 17,2013


SLS Client in Pueblo


Agency Based Home Health


Worker was NOT given a raise after the July 2013 rate increase





Paid in care




52, 305.28















Photo of Tiffany Zimenoff picking up a pumpkin.

Individual Service Plan

Tiffany Zimenoff






# of Direct Service










Stepfather, 2

Brothers, 1

Sister, Family











Medical- appointments




BackUp for

All Services








Long Term




12 hrs/week

Home Health



Long Term

Care Nursing


1 visit/week

Home Health


1 (Lindsey)







2x Year



Board (CCB)

1 (Anne)


3 hrs/week

CCB Agency

1 (Deana)

Personal Care

10 hrs/week

CCB Agency

1 (Deana)













 Photo of Joshua Winkler -Member of the CCDC Board of Directors- and his service female dog Keystone.


My name is Joshua Winkler, I am a 32 year old professional mechanical engineer and disability rights advocate. I have used CDASS since it was a pilot program; the flexibility of CDASS has been essential in various phases of my life in the past decade.

When I was in graduate school most of my classes were in the evening, often I was not home until 11:00 p.m., and I had no trouble hiring attendants who could come at midnight through CDASS. Once I went to work, I had to shift my days to the opposite end and again had no trouble hiring attendants who would come at 4:00a.m. to get me up in time to be to work by 7:00 a.m. I traveled frequently with my job and was able to hire attendants who could travel with me to do my care on the road, this is quite difficult under traditional home health care.

Recently I had to undergo surgery for a skin issue caused by a bony prominence, without CDASS,I would be recovering in a nursing home, but instead I am able to recover in my own home. It took substantial convincing to persuade my surgeon to sign off on me returning home for my recovery, however, I was able to demonstrate that through CDASS I have several attendants, including an RN, who are very familiar with me and my needs. It is not only less expensive for me to recover at home, it is better for my diet and mental attitude which are critical to proper healing.

With Consumer Direction works, it is often better for the client, the attendant, and the Medicaid Budget. Consumer Direction needs to be expanded to more populations and to more services in Colorado. This can be achieved through several means, including: expansion of CDASS services, inclusion of CDASS in all waivers, and implementation of the Community First Choice option.

Thank you for your time.













March 28, 2013


Vivienne Belmont

Policy Analyst, Colorado Department of Regulatory

Executive Director’s Office

Office of Policy, Research & Regulatory Reform

1560  Broadway ,  Suite 1550

Denver, CO  80202


Dear Ms. Belmont:

I am writing you on behalf of the Participant  Directed Programs Policy Collaborative (PDPPC) to comment on the Sunset Review for the In Home Support Services (IHSS)  program and to formally request specific recommendations.  The group requested that I transmit this information to you.

PDPPC  is a stakeholder group of clients, providers, single entry point agencies (both private and county), other professionals, family members and staff from the Department  of Health Care Policy and Financing and their contract Fiscal Management  Services company Public Partnerships Limited (PPL) of Colorado.  This is the group used by the Department  to work  on policy issues related to consumer direction.  We also work with HCPF on expansion of both, CDASS and IHSS and have the desire to see these service delivery options in most HCBS waivers.    We assist with rules, policies, communications and work with HCPF on every aspect of implementing and supporting these important service delivery options.


We believe that IHSS is an essential component in the continuum for Long Term Services and Supports. Many clients can manage their care completely or have an authorized representative able and willing to do so.  Those clients benefit from the Consumer Directed Attendant Support (CDASS) program.  However, not all clients can direct all aspects of their care and not all have an authorized representative.  Others choose not to take complete control for a variety of reasons.  All or nothing  does not work and many can direct aspects of their care and want to have a choice about who comes into their homes and touches their bodies, and when they do so, IHSS provides that flexibility but also includes safeguards for those who need or want that extra level of management support.

The PDPPC voted unanimously to recommend that HCPF support the following changes in the IHSS Sunset Legislation that will be introduced in 2014 session.  The PDPPC first recommends that IHSS continue.  We also recommend the following changes in the law to be clear of the legislative intent and to prevent contradictory regulations or interpretation.


IHSS clients should be allowed to hire their spouses.  The group would be open to discussing a limitation similar to CDASS of 40 hours a week  if there were corresponding wage flexibility or if the IHSS agency could guarantee that the spouse did not have to work more than 40 hours a week.  In CDASS many family providers can only be paid for 40 hours a week but must work many more hours.


IHSS clients should be able to receive services anywhere in the community including but not limited to their employment, school, restaurants and during travel.


IHSS clients and providers should have choice about nurse oversight .  The nurse practice act is supposed  to be waived for IHSS.  Agencies should not be forced to use nursing for which they are not reimbursed. IHSS providers take on the responsibility of providing 24 hours backup and have less ability to dump difficult clients.  They do not get increased money for this and trade-off for that was to be flexibility on the medical model.  Agencies have not been given consistent direction about this and many are erring on the side of caution and having nurses certify competency for attendants.  This is an unnecessary financial burden and not consistent with a consumer direction model.

The PDPPC also believes that the law should change to allow all clients (including those using a traditional agency service delivery model) to receive services anywhere in the community.  The federal language on “in home” w as meant to distinguish community based care from hospital or facility care and the state can easily  define the “residence” as any place in the community where the client needs services.  PDPPC also encourages the Department to seek legislative changes if possible to allow spouses to become a certified nurse aide and be a caregiver under the regular home health agency model, if the client is making that request.  This can and should be done under the same conditions as it is done for parents.  Family members who are care providers who work for agencies should be treated the same as other employees in terms of rights and responsibilities.

We hope that you take these recommendations from this diverse group seriously.  If you have any questions, you may feel free to contact me or the group’s co-chairs:

Chanda Hinton at: 303-246-4290 (ch@iamtheplan.org) or

John Barry at: 303-866-2786 (john.r.barry@state.co.us)



Julie Reisking

Executive Director

Colorado Cross-Disability Coalition



Cc: PDPPC Co-Chairs


Kevin Smith loading off his accessible van at the Denver Capitol





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