2009 Goals

CCDC will continue to address theme issues that permeate all programs and areas while we operate seven programs and address specific issues identified by our membership.

 
Theme Issues:
Nothing about us without us means robust representation with adequate notification and timely information. This means that we oppose anything that does not involve adequate inclusion of people with disabilities in policymaking positions. Specifically we will do the following activities:
 
Encourage each member to ask their legislators to make a commitment to ask the question “what did you do to involve the people affected” each time they are asked to carry or support legislation involving people with disabilities.
 
Make and keep a list of all disability related boards and commissions and support qualified people with disabilities to apply. See attached list
Whenever the Governor or anyone else complains on health care that 20% of the people use 80% of the resources challenge them to get more input from that 20%.
 
Medicaid Mental Health Advisory Committee needs membership. There is a new RFP out for review. There are 2 consumer and 2 family seats open. If people are interested they should call Rolf at 303-322-1746 or email him at rolfkotar@earthlink.net
 
Continue to include representation and how government boards work as part of the advocacy training.
 
Continue to provide support to our leaders that are able to get on boards and committees.
 
No retaliation—this has to include schools and agencies with a process to follow and a way to report and punish those that do retaliate.   Specific
 
Activities will include:
Make sure advocates address the potential of retaliation in letters to prevent it.
 
When retaliation occurs make it as public as possible.
 
File complaints under Medicaid retaliation law.
 
Accountability-this continues to be a problem where money is spent supposedly on our behalf and then wasted. If we had control we could assure better use of funds. Then they blame us for costing too much. Specifically we will do the following:
 
Promote increased transparency in programs that receive state funding. Require those that that take government money (state funds) liable under the open meetings/open records act.
 
Assist those that need help to navigate the programs while advocating for policies that will make navigation more accessible. File ADA requests for reasonable modification of policies and complaints on program access issues.
 
Ask policymakers at each opportunity: What steps will they take to make providers accountable?
 
Document providers that turn specific clients away and stop this practice.
 
While we will continue all programs the focus will be on grassroots organizing—all groups and leaders are expected to engage in the following strategies immediately and throughout the year:
 
Ideas to help build our power base that we can all do right now:
 
Get to know your state legislator and state Senator.
 
Do advocacy in teams and play good cop/bad cop
 
Do events that promote disabled artists
 
Reach out at SSA offices
 
Introduce CCDC clearly and explain at every opportunity what we can do for you
 
Go after people we meet on the bus, in the street, in the store if they have a disability
 
Show up at drop in center activities and support groups, get on their list to speak and explain who we are and what we do
 
Every leader makes a commitment to recruit one person under 25 during the next year.
 
Join with our natural allies (ethnic minority groups, veterans groups, and senior groups and youth groups).
 
Promote idea that DISABILITY IS NATURAL
 
We need our power base to influence county commission elections

2009 Priorities:
 
  1. Fix the serious problems with the management of the Consumer Directed Attendant Support Services program. This must be done quickly and will likely involve removing Accent as the fiscal intermediary and asking that HCPF re-bid and possibly do a sole source contract in the interim. Simultaneously push for immediate implementation of HB 05-1243 to make CDASS available in all waivers, as a state plan benefit and as a major component of the SB 08-002 family caregiver legislation.    Require SEP agencies to offer CDASS to all clients at all contact points.
  2. Follow up with Karen Beye to address a variety of issues related to the Department of Human Services. Set up structure for regular communication between this department and the disability community. 
  3. Durable Medical Equipment: Work on a state level to mitigate impact on Medicare 9% cut; work on federal level to repeal legislation that requires competitive bidding for DME, restore 9% cut and remove the homebound restriction. Set up clinic model pilot in one rural Colorado community or work on other solutions for rural access. Also work to make HCPF implement the TL decision prohibiting use of exclusive lists and prohibiting denials based on “not a covered benefit” and requires review of medical necessity for all equipment.
  4. Introduce and pass bill that would create a private right of action for Medicaid at the state level. This will mean that under some circumstances we will be able to sue in state court when Medicaid violates our rights repeatedly.
  5. Boards and Commissions: make concerted effort to apply for Boards and Commissions at the state level. Local groups will make concerted effort to obtain seats on boards of mental health centers, independent living centers, community centered boards. We will also follow up with a formal letter to Cody Belzley regarding inclusion on health care related boards and within HCPF.
  6. Every leader will have a personal meeting with his or legislator by January 01, 2009. We ask that other members who are willing to do this do so as well to introduce themselves, explain CCDC and explain the importance of people with disabilities having a say at all levels.
  7. Return to major focus on grassroots organizing: We will be doing the HCPF Disability Listening Tour in most communities during 2009 (with El Paso and Mesa in 2008). Local groups will also work on issues including but not limited to housing, transportation, and working with local Independent Living Centers.
  8. Veterans Outreach –a team comprised of veterans Leslie Taylor, Kristina Sawyckyj, James Tucker, Steve Teets and David Bray will work with Julie on a specific plan.
  9. Youth Outreach: Julie will meet with NFB and will find out how they have successfully integrated youth. We will hold a youth summit in the spring and consider developing a youth board.
  10. Emergency Preparedness: Work with CDPHE on writing a disability annex to the state plan and assuring disability representation on local and statewide planning groups. The team will involve Kristin, Maxine, Sheila, Christina J. and George.
  11. Develop a “common ground” platform for sign on by other disability and “political minority” groups. 
  12. Explore ways to address service animal issues and disputes, continue discussion about pro’s and con’s of a voluntary “verification” program (not to be confused with certification which is not legal under the ADA).   Work on voluntary policing within our community to confront handlers/owners that have animals that are not under control.   Encourage service dog users to pass the canine good citizen test and explore partnership with the American Kennel Club to get free testing for service animals. 
  13. CCDC members voted unanimously to continue all CCDC programs (Legal Program for disability rights enforcement, Center for the Rights of Parents with Disabilities, Individual Advocacy (includes educational advocacy), Systemic Advocacy (policy and legislative work), grassroots local organizing, training (both for advocates and for professionals as a fee generating service) and the youth program. Members would like to see expansion of the legal program, the training institute further developed, and making changes in the youth program per the ideas brought up at the youth summit. Members asked that we provide certified advocates identification badges. Members asked that we add housing and a disability history as a component of our advocacy training.   Members agreed we need to be more aggressive about recruiting our clients that receive advocacy services to join our local groups.

 

Program Goals:

Legal Program:
Goal: Continue to enforce disability rights through class action and individual litigation.
Measurement: Number of cases initiated (either demand letter or litigation)
 
Goal: Continue testing and monitoring program to determine the extent of reported problems and to follow up on settled cases. 
Measurement: Number of investigations, number of volunteers trained and used as testers and compliance with any post settlement agreements for monitoring.
 
Goal: Continue role as leader in legal community through attorney participation on selected committees, writing and signing of important Amicus Briefs’, and commenting on the legal impact of proposed regulations or legislation.
Measurements: Document participation in various committees and effect on policy or on the legal community investment in disability
Amicus Brief (we cannot anticipate whether or not any relevant cases will be heard by the Supreme Court so this may or may not occur)
Ability of our policy team to give accurate information to legislators and policymakers about the potential legal impact of proposed legislation or regulation. This is usually felt more in avoidance of litigation or unintended consequences than by actual new policy.
 
Goal: Provide basic legal information to people with disabilities through having attorneys available to speak to groups, answer question and provide limited support to advocates. 
 
Measurements: Number of people reached and questions answered. 
Increased ability of advocates to answer questions and solve problems for clients
 
CRPD:
Goal: Continue to represent parents with disabilities who are facing discrimination that is putting his or her ability to parent in jeopardy.
Measurement: Number of cases taken, time with child either maintained or increased, and problems solved or serviced provided. Measurement may also be in stopping other form of discrimination such as housing or medical care that impacts ones ability to parent.
 
Goal: Continue to educate courts, judges, attorneys and social services about issues faced by parents with disabilities
Measurement: Number of people educated
 
Goal:  Continue to provide comment on policy and legislation that will affect parents with disabilities directly and through service on selected boards and committees on the state and national level:
Measurement: Number of policies affected, as well as meetings and hearings attended.
 
Individual Advocacy:
Goal: Continue to support volunteers to provide individual advocacy for CCDC members. 
Measurements: Number of volunteers providing individual advocacy
Weekly contact of each advocate by our advocacy coordinator
Provision of individualized training and support by our advocacy coordinator
Retention of volunteers (measuring volunteer retention but not counting negatively when volunteer needs a break due to their own disability)
Feedback from clients on the services provided by the volunteer advocate’
Win/loss percentage and achievement of goals identified by the client
 
Goal: Continue to train people to act as volunteer advocates: Specifically to hold 3 trainings in the Metro area and two in the rural area with at least one of these being for educational advocacy. 
Measurement: Training classes completed and number of people trained along with evaluations from trainees. (We do not want to measure how many become actual advocates because sometimes we determine this is not appropriate, sometimes they focus on representation on boards and committees or legislative advocacy and sometimes they are taking this as part of a job for another organization so that number would not be meaningful).
 
Goal: Improve our tracking and reporting on individual advocacy cases using our CIL database
Measurement: Weekly check in with each advocate from our advocacy coordinator with our advocacy coordinator doing the documentation from verbal reports for advocates with difficultly doing own reporting
Each intake documented in CIL at the time of intake
Make sure that each case has measureable goals within one week of intake.
Provide a monthly report of CIL data to Board to show ongoing accountability and trends.
 
Goal: Develop and implement a system to measure and document information and referral services we are providing
Measurement is existence of method to do such reporting, either through a modified use of CIL or different method.
Grassroots Organizing:
 
Goal: Continue to support local groups in Greeley, La Junta/Rocky Ford, Salida, Pueblo, Colorado Springs, Denver, Sterling, Fort Morgan, Mesa and Grand Junction. 
Measurement: Existence of these groups, staff reports of support provided to groups
 
Goal: Continue to check in with leaders in Montrose, Fort Collins, Boulder, Delta and Alamosa to see if there is interest in forming a group.
Measurement: Documentation
 
Goal: Assess the feasibility of starting groups in other unrepresented communities upon request.
Measurement: Timely response to any requests
 
Goal: Increase our outreach to veterans and youth
Measurement: Increased numbers of veterans and youth involved with our organization
Measurement: Number of specific activities aimed at reaching out to veterans and youth
 
Goal: Increase our membership through group outreach to other natural allies
Measurement: Number of activities we do with other natural ally organizations
Measurement: Number of new members
 
Goal: Increase our membership and power base through hosting events with other organizations              
Measurement: Number of events that we sponsor with other organizations

Youth Program:
Goal: Continue to mentor parent advocates to provide educational advocacy to students not served elsewhere
Measurement: Number of parent advocates volunteering
Measurement: Number of educational cases we take
Measurement: Student achievement or access to a free and appropriate public education due to our intervention.
 
Goal: Continue to encourage teens served by our advocacy program to become peer advocates and work with other youth
Measurement: Number of teens and young adults that engage in peer advocacy after receiving our services
 
Goal: Expand and improve our summer youth program though collaboration with VSA Colorado
Measurement: Successful completion of youth program as outlined in CCA proposal
 
Goal: Hold focus groups and a youth summit to develop a strategic plan to better incorporate youth in all aspects of our organization particularly in terms of leadership development
Measurement: Notes and participation as well as number of youth involved in focus groups and youth summit
Measurement: Presence of strategic plan to engage youth on permanent basis
Training and Education:
 
Goal: Continue to provide training for non profits and businesses on a fee for service basis
Measurement: Number of trainings, frequency we are asked back after we provide training and evaluations of the training events
 
Goal: Explore offering trainings for the general public aimed at target audiences as a fee generating community education program
Measurement: Commencement of at least one and no more than 4 pilot seminars that we develop and advertise
 
Goal: Upgrade our website as funds allow and continue to use our website as an educational tool for the general public and our membership
Measurement: Existence of dynamic website, user comments on website, and increased traffic
 
Goal: Continue to participate in fairs, festivals and community events where we can provide community education and materials
Measurement: Number of events we attend, number of people reached at events and number of materials (estimate) given out at each event.
 
Goal: Continue to develop and distribute educational materials for people with disabilities
Measurement: Number of new materials developed, number of materials distributed
Policy and Legislative:
 
Goal: Continue to support volunteers to serve on numerous boards and committees throughout the state so that there is a disability voice in policymaking.
Measurement: Presence of CCDC volunteers on various boards and committees.
Measurement: Policy changes or stopping policies due to the presence of advocates on various boards and committees.
 
Goal: Provide all relevant appointing authorities with names of qualified disabled individuals for various boards and commissions.
Measurement: Number of referrals we make to appointing authorities.
 
Goal: Continue to push for regulatory changes that will increase efficiency, promote improved quality and benefit people with disabilities.
Measurement: Number of regulatory changes implemented at our recommendation.
 
Goal: Work with the legislative and executive branches to minimize the impact of the budget cuts to the most vulnerable of the population of people with disabilities and to provide common sense solutions for cost savings in disability programs.
Measurement: Preservation of the most critical disability programs and cost cutting measures that are implemented at our suggestion.
 
Goal: Continue to use volunteer lobbyists to go to the capitol most days of the legislative session and to attend interim committee meetings off session.
Measurement: Number of days that we have a presence at the Capitol
 
Goal: Continue to offer our legislative alert explaining all bills and their impact on persons with disabilities, supporting persons with disabilities to make calls and to impact legislation.
Measurement: Publication of alerts, position papers and weekly bill charts
Measurement: Number of members that follow up on action alerts (this is often an estimate based on feedback that we get from legislators)
 
Goal: Provide specific suggestions for amendments on bills that will have unintended consequences, support bills that will help our community and oppose bills that will hurt our community and address our specific legislative agenda as outlined below.
Measurement: Number of amendments written into bills at our urging.
Legislative Agenda: We will continue to monitor bills and take positions accordingly and will promote the following agenda:
Private right of action for Medicaid at the state level to enable litigation when HCPF repeatedly violates our rights or refuses to enforce their own rules.
 
CICP complaint process.
 
Presumptive eligibility for Medicaid for long term care
 
Health care reform bill that will come out the vulnerable populations task force
 
Continue to make sure that all bills that will affect our lives have provisions that require meaningful involvement of people directly affected—not others speaking for us!!
 
If there is an advisory or other board attached to a bill we will oppose the entire bill if we do not have adequate representation.
Follow up on SEP audit
 
Increased accountability for programs that are supposed to serve people with disabilities.
 
Any law that is supposed to give us rights must have an enforcement mechanism and that mechanism must be useable by the average citizen. We need to get teeth put into past laws passed such as the anti retaliation provisions. We will no longer support any bills that do not have strong enforcement. 
 
We need to legislate ways to remove toxic government employees
 
Areas of further exploration
 
Poor quality of care and training in Mental Health-Because most people are so afraid to complain there are few appeals. Our focus will be on promoting increased competition but we will continue to help people appeal. 
 
Create a government “Office of Accountability”. We began this after our March 2005 JBC action and ran into trouble because we could not get governor buy in on anything that would have enough power to work because it could cause conflict with other cabinet members. We looked at hooking up with the Lt. Gov. and with the AG, but there are also conflicts there because they represent the state. Most of our work is legislative and needs the support of the Governor, so the Judicial branch isn’t appropriate. Louise suggested drafting a proposal and taking it to the Governor. The Council on Disabilities once had that authority with the chairmanship of Mark Simon under Romer’s Administration. It was made ineffective under Owens’s and is now codified, but no one knows what has happened. 
 
The Independent Living Centers are an important part of our network and should be held accountable. Some ILC’s are fantastic and others are horrible. We need to work with them to make sure that they are advocacy focused and providing the four core services. They are all governed by local boards and the boards must be at least 51% people with disabilities. We decided to make more of an effort to connect with them and to do secret shopper if there are complaints.  We also need people on their boards.
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