HEAD START®

Well-Child Health Care: Making It Happen

Training Guides for the Head Start Learning Community

Table of Contents | Preface | Introduction | Module 1 | Module 2 | Module 3
| Continuing Professional Development | Resources

MODULE 3: advocacy, action, and access

Outcomes | Key Concepts | Background Information | Activity 1 | Activity 2 | Activity 3 | Activity 4 |Next Steps
download these pdf attachments: Handout N | Handout O | Handout P | Handout Q

Outcomes

After completing this module, participants will:

• assess which community institutions significantly affect the health care of Head Start families;
  
  
• develop strategies to advocate for needed health services; and
  
  
• assist parents through education and consultation to become effective health care consumers and strong advocates for their families' health care needs.

Key Concepts

Head Start offers a key link to introducing young children and their parents into a broader network of community support. As a central community institution, Head Start can notice gaps in service and advocate for change.

Staff members fully understand the ins and outs of the health care system in their community can facilitate the efforts of parents to receive the best care for their families.

Receiving the best care requires three levels of advocacy:

• Advocacy on a personal level with an individual health care provider to assure the delivery of needed services (for oneself or for a child)
  
  
• Advocacy with a health care system to assure that the benefits promised are delivered as described in contracts
  
  
• Advocacy to make changes in the system if offered services do not meet the needs of families

As Head Start assists parents in understanding and receiving services, it can also help community providers to understand and effectively serve Head Start families.

Background Information

A. Parents as Community Advocates

Parents play a vital role in the community as advocates for the health of their children. The Head Start staff can support and encourage parents as they influence the goals and character of community services and make them more responsive to the needs of their particular community. Consider Mrs. Huey's story…

Mrs. Huey, her husband and three daughters recently emigrated from Hong Kong. They live in the top floor of a 90-year-old Victorian house. The two older girls participate in Head Start and the family includes a six month old baby. Upon enrollment in Head Start, the girls were linked to a medical home for routine examinations and blood work. It was discovered that they both had borderline "high" lead levels in their blood. The Head Start health coordinator explained the meaning of the test results to Mrs. Huey and strongly recommended the baby be tested. The baby had even higher lead levels than her sisters.

Mrs. Huey and the Head Start Family Service Worker found many health violations in the tiny apartment—most notably chipping paint and crumbling asbestos covered duct work. With this knowledge and the support of a Head Start advocate for translation, Mrs. Huey notified the landlord of the problem. He ignored her completely. Mrs. Huey then approached the Health Department with letters of support from her medical doctor and the Lead Poisoning Prevention Program.

The Health Department visited her home and made the landlord clean up the lead problem and asbestos in all five of his units.

Knowing her neighbors must be in similar danger of lead poisoning, Mrs. Huey and her neighbors convinced the community health center to hold a free clinic for lead testing of children. Of the 45 children tested, five children had elevated levels. A health educator from Head Start held a workshop in the evening for the community to attend and learn how to safely deal with lead paint. Mrs. Huey pointed out to the Lead Poisoning Prevention Program that most people on her street could not read the English-only lead prevention pamphlets. Literature in English, Spanish, and Chinese is now distributed throughout the community.

Mrs. Huey's story shows the power that one advocate can have in a community. Head Start staff members can help empower parents by supporting their efforts with education, logistical support (translation, transportation), and information regarding existing community resources.

Mrs. Huey's neighborhood has a special need for lead poisoning awareness. By building partnerships between existing community services, she was able to improve the delivery of community services in her neighborhood. When agencies share information and collaborate, the delivery of services to children and families is improved. Through Head Start's educational workshops and the Lead Prevention Organization's literature in three languages, the public is now becoming informed. When the health center expanded its services to provide a special screening clinic for lead, those already poisoned could be identified and treated. The Lead Poisoning Prevention Organization and the doctor at Mrs. Huey's clinic communicated with the Health Department to ensure a swift response.

B. Community Partnership

Head Start is a central community institution for low-income families and children. The Advisory Committee on Head Start Quality and Expansion (1993) asked how this institution should function in the 21st Century. Head Start staff members play pivotal roles in reaching out to the greater community and forming alliances between community services and linking children into this network of resources. For families to be stable and thriving they need services from a broader community and they also need to be involved in that community.

An important link to the broader community lies in the Health Services Advisory Committee (HSAC). This body within Head Start is made up of local health care providers, experts in relevant fields, and parents. It may include an official from the Public Health Department, physician, school administrator, dentist and experts in mental health and disabilities, and Head Start staff members. Medical professionals on the committee often agree to treat Head Start students in their offices. The Health Services Advisory Committee looks at available community health services and advises on how to handle health issues. Head Start staff members are advised of important health issues in the community (e.g., increases in tuberculosis or environmental pollutants) and advised how to best protect the health of their children with this knowledge (e.g., yearly tuberculosis testing). The HSAC devises a working health plan that responds to current information regarding the community. With guidance from the HSAC, the Head Start health plan will not be static and outdated, but change with current needs. Through contact with the members of the community on the HSAC, Head Start staff can acquaint the community at large with their vision that "parents are the primary educators, nurturers and advocates for their children", and must be respected in that role.

For parents, entering the broad network of services can be quite daunting. Staff members can first assist parents in applying for Medicaid if eligible. If parents are informed that a needed service is "uncovered", the staff can assist them in confirming this. Parents and staff members can then advocate for a change in policy that would provide coverage in the future. In most cases funds for uncovered services will be provided by Head Start. By working in partnership with Medicaid providers, Head Start can open the door to a wealth of services to meet well-child health care needs and special needs. These special services include occupational therapy, physical therapy, speech therapy, and mental health counseling.

When staff member keep abreast of health care information in the community, they are most effective in assisting parents. Funding cuts, state immunization requirements, new funding sources and eligibility requirements are all changing elements in the dynamic field of health care. An active Health Services Advisory Committee can be very helpful by providing current information.

When parents and Head Start staff members take an active role in community planning, they provide a powerful force in the development of broader community resources that reflects the needs of parents and families. Proactive steps need to be taken to establish ongoing relationships with community organizations. After identifying recurring concerns of Head Start families, alliances can be formed between families, the staff, and services to meet those needs. Examples of collaborations could be a large medical center, Head Start and the local clinic.

Through this partnership, seminars and workshops dealing with relevant topics can be held for parents and the staff. A wealth of health care knowledge can come to the Head Start center. Other community partners could include local Park and Recreation departments, the health clinic serving local children, and a representative of the police station to help ensure safe recreation for the children when they leave Head Start. Strong communication, cooperation and sharing of information among agencies and community partners will build collaborations that can truly meet the needs of the Head Start community into the 21st century.

C. Children's Health Insurance Program (CHIP)

The Balanced Budget Act of 1997 included a comprehensive children's health initiative under Title XXI of the Social Security Act, the State Children's Health Insurance Program (CHIP). This new program enables states to initiate and expand health insurance coverage for uninsured children. The law allows states the option to expand coverage for children through a separate child health insurance program, through expanding Medicaid coverage, or developing a program that combines features of both Medicaid and CHIP. CHIP is a valuable resource for those Head Start families who make too much money to qualify for Medicaid, yet cannot afford to purchase private health insurance.

Head Start State Collaboration Offices should be working with State CHIP planning committees about developing outreach strategies and enrollment plans for children and families to ensure Head Start is included in a states Child Health Plan. Specific strategies for outreach that can be conducted by Head Start programs include:

• informing families about Medicaid and CHIP as part of their enrollment process;
  
  
• contacting their State Medicaid office to see if presumptive eligibility is being offered to children enrolled in Head Start;
  
  
• assisting families with completing the application for Medicaid and CHIP—some states may have a developed a joint application;
  
  
• inviting a representative from Medicaid or CHIP to become members of the HSAC; and
  
  
• linking with community partners who are also involved in Medicaid and CHIP to share ideas about how to coordinate education and outreach activities.

D. The Links for Families Program

An example of a working collaboration is the Links for Families program operating in Boston, Massachusetts. This program combines the ABCD Head Start program, Boston Medical Center, and the network of community health centers in Boston. This program was initiated in 1996 because the same population of children used, or were eligible for, both services and there was no formal mode of communication between the two services. The collaboration allows Head Start and the medical providers to work most efficiently together. The collaboration works on three levels. These are as follows:

• Strategic Planning: Solutions to challenges to communication and service delivery are explored. One example is the development of a consent form to enable teachers and physicians to communicate directly about the children while respecting confidentiality and parental consent. Another example is the development of a referral system where physicians can directly link eligible children to their local Head Start center through a central office.
  
  
• Cross-training: This area permits the Head Start program and the medical providers to share knowledge. A Health Manager from Head Start now visits the clinics personally to inform the medical staff which examinations and forms Head Start needs to be sure that children are up-to-date with their care. This decreases misinformation and unnecessary services. Phone calls between the two agencies decreased, and when there are questions, the medical staff now have a personal contact to call for answers. Physicians or early childhood specialists go out to the Head Start sites to teach the staff about relevant topics. These include substance abuse, reading behavioral cues, handling aggressive behavior or lead poisoning. Valuable knowledge is shared by all members of the collaboration to the benefit of the children.
  
  
• Information Dissemination: This area allows the staff from both institutions to understand the other's organizational structure. With this knowledge, the proper person or department is easily accessed when an answer to a specific question is needed.

Questions for Discussion/Reflection

Think about your own personal experiences in advocating for change. It can range from being as simple as changing the lunch times at school so your kindergartner does not collide with 5th graders, to creating a public campaign to clean-up the toxic landfill in your community.

• What obstacles did you have to overcome? (Fear of public speaking? Persons in authority ignoring you?)
  
  
• Did you learn any skills that can apply to advocating for change to benefit your Head Start community?
  
  
• Did you work alone or organize a group of people to work toward the same goal? What is most effective?

Well-Child Health Care: Making It Happen...

A model of advocacy in action, the Health Coordinator in Olympia, Washington serves on health committees or task forces for the Thurston County Health Department, state Department of Social and Health Services, state Health Department, the task force addressing children's dental access, local schools and other organizations. Six dentists volunteered their offices for exam clinics (some on days off!) after hearing a presentation by the Health Coordinator at the dental society meeting.

Activity 1: Sam's Story Part Three—Advocating for Services

Purpose: This activity helps participants develop skill in advocating for services needed in their community. It also sharpens skills in building collaborative relationships with the services already available in their community.

For this activity you will need:

• Handout N: Sam's Story—Part Three, for each participant.

Step 1: Distribute and review Handout N: Sam's Story—Part Three with the participant(s).

Step 2: Discuss the following questions:

Where do you see a need to build collaborative relationships in your community and how would you go about doing it?

• How could your current Health Services Advisory Committee (HSAC) help?
  
  
• Who could you add to your HSAC to help?
  
  
• What state and county health committee or task force could Head Start staff join to increase influence in policy making?
  
  
• How do you keep abreast of all the services available in your community? How do you assess which ones will be of help to your Head Start community?

Where does advocacy for change in the existing system need to take place in your community?

• Who would you talk to? What would you say?
  
  
• Does the staff understand the ins and outs of the health care system in your community? How are gaps in services addressed?
  
  
• Who is currently on the HSAC to help advocate for change?
  
  
• Who could you add to the HSAC to help advocate for change?

Points to Consider:

• Review the three levels of advocacy. Through this activity, we are exploring the third level of advocacy to make changes in the system if services offered do not meet the needs of families.
  
  
• Collaboration is essential in working for these big changes. Collaborators can apply joint pressure to decision makers. They can also offer moral support to each other over the long-term effort. This kind of change is tough!

Well-Child Health Care: Making It Happen...

The goal: Close to 100% success rate in linking children to a permanent medical home at Tri-County Head Start program in Colorado! The key? A strong commitment on the part of the health departments and local physicians.

Activity 2: Pathways to Care

Purpose: Participants review their understanding of how to access the health care delivery system in their own community, and share their knowledge and experiences with others in the group.

For this activity you will need:

• Handout O: Children in Need
  
  
• Four large pieces of poster board
  
  
• markers
  
  
• glue for each team
  
  
• A sample poster board with a puzzle drawn on it, with large spaces (see Step 3)
  
  
• Construction paper squares: ten pieces for each team approximately 4" by 4" in yellow and 10 pieces for each team of the same size but in red.

Step 1: Explain the purpose of the activity, and divide the participants into four or more groups, with four to five participants in each group.

Give each group a story from Handout O: Children in Need, describing a child in need of health services. If you have a very large group, prepare additional stories from your own experience.

Step 2: Let each group review the story of their child. Give them 10 minutes to discuss the steps that they would take in order to access health services for this child and family.

Also discuss any collaborations that would make sense. Encourage participants to make notes. At the end of their discussion, ask them to write each step in the process to accessing care on one piece of yellow construction paper.

Step 3: Tell participants that they are going to create a game—a maze—that a family would need to go through in order to get services for this child.

Give them each a poster board. Show them the sample maze you have drawn. Ask them to create a pathway from start to finish, making blank squares for each step. They should just outline the squares, not label them.

Step 4: Now ask each team to read its story aloud.

Step 5: After each team has read its story, ask each team to pass its game board and yellow squares to the team on its left.

Step 6: Each team now is asked to place the step to accessing services for the child on the game board in the order that they should be taken.

Paste them on the board, and be ready to explain why you are proceeding in the way that you are.

Step 7: Each team has ten red papers. On the red papers, write up to 10 barriers or pitfalls that a family might face in accessing care. Write the challenges that advocates for change in the system might face.

Place those along the pathway to care also.

Step 8: Have each team share its pathways to care, demonstrating the steps and the barriers.

Step 9: Discuss the pathways as a large group:

• Were there similarities in the pathways to care among the four different stories? What were the differences?
  
  
• How did the pathway created by the "receiving" team compare to the pathway developed by the "creating" team?

Explain to participants that barriers occur at expected and unexpected points and require detours or alternative routes. However, there are usually logical ways to proceed in order to access care.

Points to Consider:

• Head Start staff members can help families in a number of ways, but cannot lead the families all the way. We can only guide them to the pathways to health care. The goal is to empower them to be able to stay on path or to create pathways for themselves.
  
  
• Advocacy is necessary to make needed services available when an assessment of the community indicates that these services are missing.
  
  
• Collaboration and communication between existing service agencies will greatly improve the delivery of services to children.

Activity 3: Services for Children

Purpose: This activity challenges a staff person to plan a way to access care for a child in need.

For this activity you will need:

• Handout O: Children in Need

Step 1: Ask the participant to imagine that she is going to write an example for a new staff person in Head Start, in order to help the new person understand the health care system in this community.

Ask the participant to think about a child that has recently been enrolled in Head Start and had a need for specialized health services. (If a situation does not come easily to mind, use a sample story from Handout O: Children in Need.)

Step 2: Ask the participant to think about the steps that she went through in order to help the family access care.

• Who was the first person she talked with?
  
  
• Where did they go from there?

Think about the path that was taken to get the care needed.

Step 3: Ask the participant to write or draw an illustration of the care pathway. Label each step on the way, and indicate which people had to be involved.

Also make note of barriers or pitfalls that were encountered, and how you handled them.

Step 4: Ask the participant to share the story with you and/or present the scenario at a staff meeting for feedback and additional ideas.

Points to Consider:

• Barriers occur at expected and unexpected points and require detours or alternative routes. However, there are usually logical ways to proceed in order to access care.
  
  
• Head Start staff members can help families in a number of ways, but cannot lead the families all the way. We can only guide them to the pathways to health care. The goal is to empower them to be able to stay on path or to create pathways for themselves.
  
  
• Advocacy is necessary to make needed services available when an assessment of the community indicates that these services are missing.
  
  
• Collaboration and communication between existing service agencies will greatly improve the delivery of services to children.

Well-Child Health Care: Making It Happen...

The Health Coordinator from Olympia, Washington sums it up this way: "If the work I do can affect a change in the bigger system, then health services are improved for all children in the community, not just the percentage that comes to Head Start."

Activity 4: J.U.M.P.: Jargon Used by Medical Providers

Purpose: Participants will learn the definitions of some common terms used by health care providers and health care systems, and will practice explaining the definitions to others. For the purposes of this activity we will refer to these with the acronym "J.U.M.P." meaning: the Jargon Used by Medical Providers.

For this activity you will need:

• Handout P: Insurance and Medical Jargon Cards
  
  
• Handout Q: Insurance and Medical Jargon Definition Cards

Step 1: Ask the participants how many of them have encountered an unusual term, word, or acronym recently in their reading or conversations with health care providers—something that they didn't understand at first.

Write the terms/words on the board. If no one thinks of a term readily, you might write a few from your own experience.

Step 2: Lead a discussion on the challenges with J.U.M.P. (the Jargon Used by Medical Providers) in the health care system—both the traditional challenge of medical terms and the newer challenge of terms related to the "system"—the variety of different health care plans, mechanisms for payment and explanations of exclusions in medical coverage.

Step 3: Acknowledge that, while Head Start staff might come to understand the J.U.M.P. in the health care system/setting, this understanding might come much more slowly to parents involved in accessing care for their children.

It is the responsibility of Head Start staff, in assuring that families are hooked up with a medical home, to help the families to be comfortable with the terminology they will encounter.

Step 4: Shuffle all of your jargon and definition cards. Give half of the participants a jargon card, and the other half a definition card. Be sure that each card has a match in the group.

Now encourage participants to get up, move about the room, and find their "partners," the person whose card matches the one they hold.

Step 5: When they have all found their partners, ask them to confer for a moment together.

After they have conferred, ask each pair to tell the group which word they have and then to describe the meaning of it, using both the written definition and any additional information they would like to include in order to make the definition more clear.

Step 6: Congratulate the group on their skills in finding definitions and explaining them.

Step 7: Now shuffle the rest of your cards and distribute them again. Ask the group members to again find their partners. This time, tell them that they will be asked to explain their term, but to pretend that they are explaining it to a Head Start family with a specific challenge.

Step 8: Give each pair a chance to talk about their word together. Then assign each pair a special circumstance. You may make up special challenges based on the families in your own Head Start program. Some ideas follow:

• Low literacy
  
  
• Non-English speaking
  
  
• Teenage parent
  
  
• Cultural health beliefs and practices
  
  
• Parent who does not believe in mainstream ("western") medicine
  
  
• Parent who has reason to be frightened of "authorities"—history within the legal system, problems with immigration, etc.

Give each pair a few moments to work out how they would explain in this circumstance.

Step 9: Ask each pair to explain the term to the group. Ask the group members to think about the special situation given to this pair, and suggest ways that understanding might be improved.

Step 10: Again congratulate the group on their abilities to explain abstract or confusing terms or concepts.

Encourage them to read medical brochures and mailings from health insurance companies critically, and to think about how to explain the system to families.

Points to Consider:

• Jargon is pervasive within health care. It is a special skill to be able to cut through it.
  
  
  • What are the consequences of not understanding some of these terms?
    
    
  • Why is it important to be able to explain?
    
    
• People may not understand and may not ask. What are some cues to "not understanding" that you can pick up from those you work with?

Next Steps: Ideas to Extend Practice

Become an Advocate

When screenings and exams discover health problems that are common to many children and families in the program, these health concerns should be discussed among the program management team and the Health Services Advisory Committee. By convening or joining a task force about the problem, Head Start can be a powerful advocate for change.

For example, if many children were diagnosed with intestinal parasites, Head Start might want to work with the local public health department to do the following:

• Investigate the local water supply
  
  
• Screen other children, family members, and staff for intestinal parasites
  
  
• Review hand washing, diapering, toileting, and food preparation procedures for home and school

Build and Utilize a Dynamic Health Services Advisory Committee

By building a strong Health Services Advisory Committee (HSAC) that is truly participatory, Head Start staff can gain access to the stakeholders in making change in the existing health care system.

One Head Start site in Washington has included a State Senator and State Representative on its HSAC. When changes were needed to increase access to dental care for the children, the Health Coordinator knew who to call—and got an appointment with the legislators within five minutes. As a result of effective advocacy, the governor has now proposed a budget with provisions that could have a significant impact on improving dental access for children in Washington. Close connections with the County and State Health Department can be developed through the HSAC, as can relationships with dentists or pediatricians willing to advocate for change.

In addition to going out into the community to represent your needs for change, the HSAC will bring important information into the Head Start community. This information includes changes in immunization schedules, methods of reimbursement, available providers and environmental issues unique to their community.

Support Parent Empowerment

Parents empowered by knowledge that will help them navigate the health care and reimbursement systems are best able to become effective health care consumers. The ability to advocate for change when available services and benefits fall short also arises from this knowledge. Regular workshops on the health care system and day-to-day contact with an informed staff person who can answer questions will help parents get the best health care for their children.

Build on Success

Look at the guide Building on Success in the Parent Involvement series of Training Guides for the Head Learning Community. Adapt Activity 3-3: "The Impact of Policies in Your Community" regarding social services to the health care system.

Hold an "Explaining" Meeting for Staff Members

Schedule a meeting for staff to come and ask questions about their health insurance. Ask each person to bring in his or her "evidence of coverage" for health insurance. Some might also bring in descriptions of coverage from family members or friends. Spend some time examining the documents and discussing the meaning of various terms or conditions. Be sure that everyone understands the ins and outs of coverage.

Encourage Assertive Communication

Consider the importance of assertive communication (by a parent or a Head Start staff member) in receiving needed services from a provider. An activity entitled "Assert Yourself" can be found in Module 2: Essential Principles of Care of the guide Caring for Children with Chronic Conditions in the Health series of Training Guides for the Head Start Learning Community.

Well-Child Health Care: Making It Happen...

Spread the good word! Head Start programs in Greene and Miami counties send staff members to private child care centers and home day cares to do screenings, exams, mental health counseling, and speech therapy; share information on social services and parent involvement; and provide startup education materials.