Step 1: Create a state team that includes individuals from both a local bleeding disorder organization and a local bleeding disorder treatment center.

As condition of participation in the BD SUMHAC state advocacy program, the state teams were required to include both chapter leaders and HTC providers.
In 2023, BD SUMHAC conducted state advocacy work with California (CA), Connecticut (CT), Massachusetts (MA), New York (NY), and North Carolina (NC). In CT and MA, the outreach was primarily conducted by HTC providers, whereas in California, New York, and North Carolina, the outreach was primarily conducted by chapter leaders/ community members. We found that state government officials in CT and MA were more responsive to outreach from the HTC providers while the community leaders in CA, NY, and NC struggled to gain traction with agencies. This same pattern bore out in North Carolina during the state advocacy program. A staff member of one chapter sent several emails to their state agencies and failed to get a response. When the same email was sent by a provider, the state contact replied almost immediately. This was a very frustrating experience for our BD chapter leaders, but it underlines the importance of provider participation in these advocacy efforts.
BD SUMHAC recommends that state teams include individuals from both the bleeding disorder community organizations and providers from the local bleeding disorder treatment centers. If there is more than one bleeding disorder organization or HTC in the state, it is helpful to engage all of them.

Step 2: Establish a consistent meeting schedule for the state team

BD SUMHAC met virtually with the teams on a monthly basis and brought advocates from all five states together once a month. This meant that the team was coming together and checking-in with BD SUMHAC on approximately a bi-weekly basis

BD SUMHAC used Doodle polls to select dates that worked for everyone on the team and sent the meeting invites to the teams for October 2023 to May 2024 so that everyone could hold the time and schedule around them. The passionate members of the state teams invested valuable time into this project. Over the course of 11 months the teams met 10 times as a full program to share ideas and learn from one another. They also met between 13 and 17 times as individual state teams. In addition to the meetings the teams tracked their time spent on the project and reported that they spent an additional 2-20 hours on the project outside of the meetings sending emails, preparing for meetings, and reviewing materials. On average the teams spent approximately 4 hours per month per team member working on this project. However, it is likely that the team under-reported the amount of time spent on the project. Also, the teams that had more members tended to spend less time per person since they were able to divide the work and did not have to attend all of the meetings. We would recommend budgeting approximately 144 hours for team members for the year’s program. In addition to the team members, BD SUMHAC staff invested significant resources into coordinating and driving these efforts.
These meetings were important for accountability and for ensuring that the project maintained continuous forward momentum. This was contrasted by the work of the Legacy States. In September 2023, we determined that since California, Massachusetts, and New York had already achieved some of the goals of the State Advocacy Program, it wasn’t necessary for them to create Chapter/HTC teams or officially enroll them in the program. Rather, the passionate advocates in those states would drive the work and BD SUMHAC would be available to consult with and support them on an as needed basis. What we found is that the projects in Massachusetts and New York came to a halt and the California project limped along in fits and starts. The failure of the legacy states was not due to the lack of passion, talent, or commitment of the members of the teams, but rather, due to the fact that life gets busy. Unless there is structure to help advocates prioritize this work, the project is unlikely to be successful.
BD SUMHAC recommends that state teams identify a project lead who will convene regular meetings with the group, ideally, bi-weekly, use doodle polls to select convenient dates and times, and send meeting invites for the duration of the program.

Step 3: Agree on the goals for the state advocacy program

The goals that BD SUMHAC used for the state advocacy program were:

Conduct at least 2 meetings with relevant state agencies
Identify a champion within a state agency
Map the regulatory landscape
Determine next steps for Phase 2 advocacy

Prior to soliciting applications from state teams, BD SUMHAC established the goals for the state advocacy program.
BD SUMHAC used a Scorecard to track progress against the goals. It was an important communication tool and created focus for all of the team meetings.
Before we developed the scorecard, it was very difficult for both BD SUMHAC and the state teams to communicate in a succinct and understandable manner the progress they had made relative to the goals in the all-state team meetings. Once we developed the color-coded scorecard, it was easy for the teams to see and share the progress that the states were making and where they were struggling.
BD SUMHAC recommends that state teams clearly define and agree upon a shared set of goals before beginning the advocacy work and develop a scorecard to track progress against the goals..

Step 4: Identify the relevant state government agencies.

Every state has a different structure for determining policy for MH and SUD facilities and for licensing/ regulating the facilities. Some states regulate both types of facility under the same agency/ department/ division and other states divide the facilities.

The state teams conducted internet research and contacted individuals in their states who were familiar with health administration and regulation in the state. These calls with contacts gave the teams a lay of the land and helped identify the agencies/ departments/ divisions that set policy and regulated /licensed for:
1. Inpatient mental health facilities,
2. Residential mental health facilities,
3. Inpatient SUD facilities, and
4. Residential SUD facilities
If you can find an organizational chart, that is ideal. The policy folks typically sit in entities that are named something like, “the Department of Health and Human Services” (for example in Montana it is called, the “Department of Public Health and Human Services” and for example, Minnesota has two separate departments: the “Department of Human Services” and the “Department of Health”). The regulatory folks typically work for entities that are named something like, the Department of Licensing and Regulatory Affairs (in Michigan, for example it is called the “Department of Licensing and Regulatory Affairs,” and in North Carolina it is called, the “Mental Health Licensure and Certification Section of the NC Division of Health Services Regulation”).

Step 5: Identify emails for contacts in the relevant state agencies, and request meetings from them starting with contacts on the policy side.

The state teams did a combination of leveraging their networks for contacts and sending cold emails to both identified contacts and generic state government email addresses. The team members searched the names of people working the relevant state agencies on LinkedIn network and identified former colleagues and classmates who were connected to folks within the state government agencies of interest. The team members reached out directly to any first degree connections, and asked the mutual connection for an introduction to a second degree connection. In three of the states the HTC advocates worked for a hospital system that includes an inpatient psychiatric facility or unit, and they reached out their connections in the inpatient psychiatric department to see if they have any relationships with either the policy or regulatory staff at the state. While two of them ran into dead ends, one of them got a successful introduction from the request. One of the state teams got a meeting because one of the advocates went to a conference with the state Medicaid program on an unrelated topic and followed-up with the behavioral health policy staffer he met there.
Often it is challenging to find email addresses for the appropriate contacts. We found that emailing the generic inboxes for the state agencies typically yielded little response. We found that contacts were most responsive when we were introduced to them by a mutual acquaintance. Second to that, we found they were most responsive to outreach from a provider to a specific individual email address.
Generally speaking, the policy staff were more receptive to meeting requests (compared to the regulatory staff) and once the policy staff were engaged they were willing to introduce the team to the appropriate staff members from the regulatory agencies. Regulatory contacts were hard to identify and typically unresponsive to requests for meetings that were not prompted by their colleagues on the policy side. Additionally, the policy staff members were typically more willing to play the role of a state “champion.” However, the regulatory staff can help confirm the understanding of the state regulations and identify potential opportunities to revise the regulations.
Finally, it took the teams a very long time and a lot of persistence to get responses from state government agencies. Sometimes months would go by between responses from contacts. The teams found this very frustrating but with patience and persistence, all of the teams were able to successfully engage with the appropriate contacts in the agencies.
BD SUMHAC recommends that state teams leverage personal connections and social networks to request introductions to relevant state contacts. Leverage the state team’s LinkedIn network. Leverage HTC relationships with inpatient psychiatric facilities or units within their hospital system. If the state team does not have any pre-existing relationships with the relevant state agencies, email addresses for individual staff members can often be found through googling, by searching the state agency website, and by identifying the email convention used by that agency. For example, if you know that the U.S. House of Representatives uses firstname.lastname@mail.house.gov then as long as you know the staffer’s first and last name, you can determine the person’s email address. Once email addresses have been identified, send them an introductory email with a meeting request. It may take several weeks or even months for government officials to respond to your outreach. Follow-up on the emails approximately every two weeks. After two to three attempts from one member of the team, have a different member of the team send a similar email with a different subject from a different email address.

Step 6: Locate the state regulations for inpatient and residential MH and SUD treatment facilities.

The goal here is to identify any language that could be a potential barrier to the admission of people with bleeding disorders or the use of infusion or injection medication in a facility. It is also to identify language that advocates could use as a tool to encourage facilities to accept individuals with bleeding disorders.

In advance of the meetings with government officials, BD SUMHAC conducted online regulatory research.
We began by identifying the different types of inpatient and residential MH and SUD facilities that were licensed in the state. To locate the regulations online, search: “name of state” + “regulations” + “name of a type of licensed facility.” For example, “Minnesota regulations intensive residential treatment services.” If you cannot identify the types of licensed facilities, you can search a more generic term such as, “North Carolina regulations inpatient mental health facility.” We sought to locate the actual regulations, statute or administrative code rather than summaries of the regulations and determine what the regulations say in response to the following questions:
1. Are individuals permitted to self- administer medications in the facility? If so, under what circumstances is it permitted? Does it have any language specific to the self-administration of infusion or injection medications?
2. Are facility staff permitted to administer infusion or injection medications in the facility? If so, under what circumstances is it permitted?
3. Are facilities required to administer necessary medications such as infusion or injection medications?
4. Are facility staff permitted to allow an external provider to administer medications (including infusion and injection medications) in the facility?
5. Are facilities permitted to allow individuals to bring medication from home into the facility? If so, under what circumstances is it permitted?
6. Are facilities allowed to “cherry-pick” individuals for admission or are there protections for people:
  1. with disabilities (beyond the federal regulations),
  2. who use prescribed medications
  3. who have complex medical conditions
We used the “find” or “search” feature to locate key words: “self-administration,” “medication,” “administration,” “infusion” and “injection,” “disability,” “handicap” (some of the regulations were written in a different era and use outdated language), “prescribed,” “complex medical needs,” and “chronic condition” in the document. In addition, we searched for a section on “patient rights” or “client rights” or “recipient rights” to see if there is any language that might be helpful for an individual with a bleeding disorder seeking access. BD SUMHAC has created a table that may be used to help organize the identified regulatory language.
We then created a slide presentation that summarized our understanding of the regulatory language and how it related to the issue of access for the bleeding disorders community in the state. We sent the presentation to the state government contacts in advance of our meetings. The slides included our summary of the regulations, the actual language, and any questions that we had about it. If the language seems to be clear, just confirm your understanding of the language during the meeting. An example of a slide presentation of the regulations can be found here.
When we began this work, BD SUMHAC had hoped that the state contacts would be able to give us the regulatory language but we found that this was a difficult request for agency staff and created significant delays in responses. While some officials did in fact, provide us with the relevant language, it took several months and significant effort to get a response. After a few meetings of this kind, we decided to attempt to do the regulatory research in advance of the meetings. We created slides with the regulations and our interpretation of them. We shared these slides in the meetings and asked the staff specific questions related to the way that the regulations work and how the language is interpreted by the state and the facilities. Using this approach, the staff were far more likely to quickly respond to and comment on our interpretation of language. Doing this homework in advance, while challenging and time consuming, led to far more efficient and productive meetings with state government officials.
BD SUMHAC recommends that state teams conduct regulatory research and go into the meetings with state officials with specific regulatory language and questions for the contacts.

Step 7: Prepare the team for the meeting with the government officials.

Once we secured a meeting with an agency contact, we blocked the meeting time on everyone’s calendar and included a hold for the 15 minutes prior to the meeting for a final prep and 15 minutes after the meeting for a quick debrief. We had a meeting with the state team to review the goals and materials for the meeting. The goals of the meetings are to:
1. Provide education about bleeding disorders
2. Introduce BD SUMHAC and the issue that people with bleeding disorders are being denied access to inpatient and residential mental health and substance use treatment facilities in their state. Provide some national context for the issue
3. Ask questions and get clarifications about the state regulation
4. Explore opportunities for partnership:
  1. Assistance in the event a person with a bleeding disorder has been denied access because of their condition.
  2. Education for facilities
  3. Clarification of the regulations
We created an agenda for the meeting. Although we occasionally got 45 minutes to an hour, most of our meetings with state government officials were 30 minutes. For our 30 minute meetings, our state teams spent no more than 15 meetings presenting, and left the rest of the meeting time available for questions and discussion. A sample meeting agenda can be found here.
We reviewed the slide presentation, determined which advocate would present which slides, and gave talking points to each team member. We also determined who would introduce the team, who would run the slides during the meeting, and who would take notes. A sample meeting presentation can be found here.
We gathered the team for a final check in 15 minutes before the meeting. This gave the team a final opportunity to ask questions. It also allowed the team to make last minute pivots and substitutions if someone on the team could attend at the last minute, and reduces the likelihood that team members will be late for the meeting.
BD SUMHAC recommends that state teams hold a meeting to prepare the team for the meeting with the state officials.

Step 8: Meet with the government officials.

During the meeting the team members stuck to the agenda and kept the presentations as concise as possible so that the group had enough time to ask and respond to questions.
We always had a designated note-taker on the team.
BD SUMHAC recommends that state teams gather for 15 minutes immediately before the meeting for any final preparations.

Step 9: Debrief as a team and send a thank you note to the government officials.

Step 10: Determine next steps for advocacy.

Immediately following the meeting, we took 15 minutes to react to and discuss what we heard in the meeting. We determined who wouldl write/ send the thank you note and what we wanted to include in that follow-up. Thank you notes are not only gracious but should confirm what you heard and include any additional follow-up questions.
In the first few meetings we had, we didn’t schedule time to immediately debrief from the meeting and as soon as the meeting ended, we found ourselves emailing and texting eachother to share our throughts and assign responsibility for the follow-up items. Eventually, we started planning for a 15 minutes zoom after each meeting and it made the debrief and follow-up much easier and smoother.
BD SUMHAC recommends that state teams gather for 15 minutes immediately following the meeting and send detailed thank you notes to the officials.

We met to determine if the team needed to meet with additional state government officials or advocates in the state. If we didn’t find any regulatory barriers, we determined that the primary barriers were at the facility level and therefore, the best next step would be to identify opportunities to educate the facilities. In places where there were potential regulatory barriers, we had to determine the nature of the barrier and whether the regulation needed to be clarified (which could be done by the administration issuing a clarification or in the context of a regulatory update) or whether it would require a change in the underlying statue (which would require the state legislature to act).

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