The mission of the National Coalition of Black Lung and Respiratory Disease Clinics is:
“To ensure accessibility and quality comprehensive care for those at risk for, or suffering from, black lung and other respiratory diseases.”
II. Goals for the Next Five Years (2013 – 2018)
- Build a strong unified national voice
- Create a stronger public voice for respiratory disease issues
- Strengthen individual clinics/Deepen learning for all members of the Coalition
- Develop clear standards of quality/database
- Have a more participatory organizational process
- Make the programs of the Coalition stronger and more connected to the overall work of the Coalition
- Adopt an Annual Plan (activity schedule, program goals, organizational development plans)
SUMMARY: by 2018, the National Coalition of Black Lung and Respiratory Disease Clinics will have a strong unified national voice; there will be deeper learning for all members of the Coalition; the organizational process will be more active and more participatory; clear standards of quality will be developed; there will be a stronger public voice for respiratory disease issues; programs of the Coalition will be stronger and more connected to the overall work of the Coalition; and the board will adopt an annual plan.
The NCBLRDS needs to develop a different relationship with HRSA and take a pro-active approach. This means the NCBLRDC will develop an agenda of proposals to HRSA about changes in policies, procedures, regulations, forms, site visits and evaluations. In addition:
The NCBLRDS website will be updated and become more user friendly. Information on services provided, an interactive map with clinic Information, membership form, minutes from previous meetings, and contact information will be included on the web site;
There should be a meeting each year with all NCBLRDC board members and HRSA staff where the NCBLRDC presents its own agenda of proposals, This meeting will be held in conjunction with the Washington DC meeting;
The leadership of the NCBLRDC should have regular meetings with the Director of HRSA especially now that they have centralized their operations;
When a new person is hired by HRSA, a team from the Coalition should do do an “orientation” for new staff person in the field, so they make a clearer connection to the work that is being done by Coalition members. An orientation packet will be put together which will contain contact information, clinic information and services offered.
Since there has been frequent turnover at HRSA, the Coalition needs to do more MOUs-memorandums of understanding-about rules, procedures, and guidelines so that there is more consistency year-to-year (with copies of the MOUs being sent to the Members of Congress from each state which has a NCBLRDC member);
For new NCBLRDC board members, there should be opportunities to learn more about the HRSA policies and personnel; and,
The NCBLRDC Board should develop an annual process to develop a “platform” of policy recommendations (such as a national policy for reimbursement for pulmonary rehabilitation) and position papers (such as changing the way consultants are hired and technical assistance is spent)
The NCBLRDC should:
Develop a system for peer support during site reviews;
Develop a campaign plan to push for more funding from Congress and research the possibility of other resources (including foundations)
Develop a case statement (including compiling national data) in conjunction with the March meeting: “if we had more money, here’s what we could do” and
The Governmental Affairs Committee will develop a campaign plan to meet with as many Members of Congress as possible, and decide the best approach for each Member, whether in Washington, D.C. or at the local clinic site.
Produce a video which will show the mission, vision, and accomplishments Of the Black Lung Coalition.
(3) The NCBLRDC must continue to grow
The NCBLRDC should:
Invite any grantee who are not current members to the NCBLRDC to join;
Recruit more individual memberships, with each local program setting an Annual membership recruitment goal;
Expand advisory committee and develop a plan to build strong (or stronger) working relationship with other national groups to work together on NCBLRDC campaigns and programs, such as the United Mine Workers of America (UMWA’J, SteelWorkers, National Black Lung Association, Citizens Coal Council, other health care coalitions, and other labor groups; and,
Strengthen individual clinics/Deepen learning for all members of the Coalition
There are many ways to strengthen individual clinics and have staff learn more.
Developing a registry for all NCBLRDC board members and others who are interested to determine (a) what they want to learn and (b) what they could help others learn;
Annual conferences are an effective way to accomplish and deepen learning for everyone. An annual survey should be done before each annual conference to determine priority topics for the annual conference;
Technical assistance (TA)- by phone, on-site consultations, workshops, written materials-should provide opportunities for all different staff people, but this needs to be done in a coordinated way. Each individual program should have a TA plan.
It is recommended that exchanges occur when feasible-this method allows one or more staff people to visit another clinic and provides a mutual learning experience (and also provides recognition to the local staffs);
Hold Webinar and phone consultations based on a themes to provide an opportunity for those with an interest in a particular topic to simply dial in to the conference call; and,
Common materials will be available to members — handbooks, brochures, etc.- should be developed in a coordinated way. There will be a best practices section on the webpage for members only which will have benefit counseling handbook, a manual of “best practices” and a list of existing national health care organizations and what they do.
Each clinic should make sure they work towards offering a full range of services (including referring patients to other programs that offer services if they do not) benefits counseling, outreach, diagnostic, medical screening and referrals, patient education, treatment, rehabilitation, preventive program, pharmaceutical assistance and other support services; also, there is a need to make sure that records management, customer service, screening techniques, accounting and billing procedures, and other administrative programs are effective and efficient and standardized throughout clinics.
A potential research project is to do more baseline testing to find out more about national trends of respiratory diseases.
Have a more participatory organizational process Planned and scheduled webinars will be scheduled at the Annual meeting which will encourage more communication between members.
Webinars will offer education and collaboration between members on claims and analysis, universal standards for best practices, and issues affecting clinics.
Best Practices committee will be developed and will review the submission of topics for validity and evidence based standards for the Coalition.
The NCBLRDC Should:
1. Make the Coalition More Welcoming
The Coalition needs an orientation system for all new board members, including sending welcoming packet (this will include short history of the organization, contacts, previous board minutes and agendas)
Draft agendas and draft documents will be sent at least seven days prior to meetings. Meeting will have a theme and offer an component to the meeting. In this way, meetings become action oriented and more productive and it will allow for more time for people to meet and learn from each other (although this has to be more deliberate( and more time at meetings for educational presentations/discussions.
All committees have to be active-specific assignments need to be carried out in a timely fashion. Ad hoc committees can be established to carry out specific tasks when needed, such as developing a position paper on a particular topic.
The leadership should also make sure that committee membership is as diverse as possible, allowing people to with different job descriptions, people from different states and people with different levels of experience in the Coalition to work together ( and to get to know each other).
2. Ongoing Leadership Training
There is a need for on-going leadership development. The officers of and committee chairs should consider attending workshops on participatory methods so they can have more productive meetings.
If a Board member cannot attend at Board meeting, every attempt should be made to send a proxy.
Make the programs of the Coalition stronger and more connected to the overall work of the Coalition.
(1) Website with information of the Coalitions activities, campaigns, Projects, and programs will be developed. Website will have links To each clinic site. Clinic information along with contact information will be included on the web site.
Have more about “best practices” and other educational components on webpage
Introduce new members of the Board and new staff with short bios on the webpage
Encourage readers to contact federal officials about specific legislative or regulatory proposals (as a way to broaden the number of people pushing for the NCBLRDC positions); and,
Make sure that once a year an annual report is prepared to be handed out during legislative visits with a list of accomplishments for the Coalition.
G. Adopt an Annual Plan
The Board of the National Coalition of Black Lung and Respiratory Disease Clinics will develop an annual plan that will include:
The schedule of the main events for the year-annual conference,
September board meeting (with the main topic for each meeting), Exchanges and other programs;
Specific programmatic goals related to the strategic plan.
Organizational development concerns
The Chairperson will work with other Board members (who volunteer to help) to develop a draft of the Annual Plan, and each board member will be given an opportunity to comment on the Annual Plan at least one month prior to the board meeting at which The Annual Plan is adopted.