Saturday, March 19, 2005
9:00 am - 5:00 pm
Location: Washington, DC


LEND Family Faculty Discipline Meeting
Saturday, February 19, 2005

Grand Hyatt Washington Hotel
Washington, DC

9:00 - 9:30---Opening and Introductions

9:30 -10:30---Maternal & Child Health Bureau

Laura Kavanagh & Merle McPherson (view PPT)

  • General overview of LEND network/diversity
  • History/background of family component of LEND programs
  • MCHB vision for the family discipline
  • Funding options for family faculties and trainees

10:30 -11:00---Overall family and disability issues related to the LEND program

Facilitated by Jan Moss

11:15 -12:15---Role of the family faculty in the LEND Program

Facilitated by Barbara Levitz

12:15 - 1:45---LUNCH, visit resource tables, network

1:45 - 2:30---Family components of the overall LEND curriculum (panel w/ disc.)

Betty Thompson, VA

Jan Moss, OK

Mark Smith, NE

Paula Lalinde, FL

2:30 - 3:15---Best practices for Family Mentoring (panel w/ disc.)

Elaine Ogburn, VA (view Word Doc)

Tanya Baker-McCue, NM (view Word Doc)

Barb Lucas, WI (view Word Doc)

Carney Derksen, IA (view PDF)

3:30 - 4:30---Family Discipline Trainees (panel w/ disc.)

Fran Goldfarb, CA (view PPT)

Dennis Stevens, SD (view PPT)

Barbara Levitz, NY-Valhalla

4:30 - 5:00---Wrap-up, next steps

Facilitated by Barbara Levitz



Approximately 40 people representing 27 LEND Programs, the Maternal and Child Health Bureau, the Bureau of Health Professionals, and AUCD attended. A participant list is available from AUCD.


1. Welcome & Introductions

AUCD Executive Director George Jesien welcomed the group and encouraged everyone to think about how to take the work done for and at this meeting and apply it more broadly. He also commented that this is probably the largest convocation of parent faculty in the country and indicates how far the impact of parents has come.


2. Maternal & Child Health Bureau

MCHB Training Branch Chief Laura Kavanagh presented an overview of the history and priorities of MCH, as well as the role of families in the MCH strategic plan (see PowerPoint). She noted that the second goal of the MCH strategic plan revolves around family centered care, an area in which LEND family faculty are groundbreakers. She said that their expertise is needed to share ideas and innovations regarding family faculty with the other training programs and to help MCH partner with additional stakeholders.

Dr. Merle McPherson, Director of the Division of Services for CSHCN provided a historical perspective of family involvement in MCH Programs, tracking how they have become the strongest family-centered programs in the nation. Changes in the medical profession began in the late 1970s when professionals realized that MCH programs weren't working and that they needed to redefine what the model of care was, rewrite legislation, and restructure the programs. Changes in models of care and legislation and program restructuring occurred over a ten-year period. The result was a call for more community-based and culturally competent programs, as well as family-centered care and family/professional partnerships. These concepts are incorporated into the nation's health goals. The 2010 Express Plan calls for every state to have family-centered systems of care in place by 2010.

Dr. McPherson also summarized the results of a national review, which includes a strong recommendation that MCHB provide ongoing leadership in family-centered care, as they are the major agency from which the drive and funding for family centered care comes. The review also recognized the need for more scientific articles in reference journals citing evidence-based need for family-centered care. She also noted the following needs:

  • Centralized collection and sharing of the enormous amount of family-centered reference materials.
  • Better integration of cultural competency and family-centered initiatives.
  • Increased capacity development in the area of family involvement and family-professional partnerships.
  • Increased community training on these issues.
  • Increased involvement of younger families.

Q&A- (Please note that these Q&A responses capture a general sense of the discussions and are not, therefore, attributed to any one person. They should not be considered official policy or statements.)

Q. What are the options for funding of family member in LEND?

A. Because the guidance explicitly calls for family involvement, grant money can be used to fund family as faculty, trainees, or consultants.

Q. Does the guidance for other training programs have the same call for family involvement?
A. It is not as explicit, in part because the LEND funding levels are higher.

Q. Does the bureau plan to mandate that more of the Title V programs involve families, rather than making it optional?
A. Part of the problem with doing so is that the programs have been level funded for some on this.

Suggestions generated for additional funding of family involvement:

  • Ask other agencies to help fund family involvement (e.g. DD Council, ADD) because their outcomes are supported whetime, and the Bureau has to be careful about adding federal mandates without additional money. Collaboration for family faculty where there are clusters of training programs. One of the new performance measures is on family involvement, and some training programs were surprised that they would be measured n families are involved in a meaningful way. Sell it as a way to get contacts for their family-related initiatives and priorities.
  • Use state education improvement grants money for personnel preparation to support family involvement, family member development, etc. Some states have developed guidelines that mandate family involvement in personnel prep activities.
  • Put a line item for family involvement in every grant that gets submitted. Over an eight year period, one Center went from 1 parent to 11 working on various projects. Programs often also get extra points for this because reviewers see it as an indication of a true commitment to family involvement.
  • Get more language for family involvement in regulations and guidances. When providing comments, ask where is the requirement or at least option for family or consumer involvement.

Q. Can you address some of the overview of the diversity of the LEND Programs?
A. If you've seen one LEND Program, you've seen one LEND Program. Trainees are at center of the Programs. It's obvious at every program that the faculty is invested in what they are doing. Leadership component, interdisciplinary training, community training and involvement exist to varying degrees at each program. Size, funding, emphasis, and structure vary between sites. There seems to be some correlation between number of years of funding and whether there is a center or (at newer programs) the program can tend to be more community-based. The amount of money spent on faculty and trainees varies based on other means of support.

Q. Is there a need for more specificity in Guidance for involvement of family-i.e. must hire a family faculty person rather than may hire?
A. Some programs can't hire family as "faculty" because of university requirements. It's a balancing act because if the guidance is too proscriptive, it shuts out some programs.


3. Family and disability issues related to the LEND Program

(from small group brainstorming session)

  • Funding (for core faculty member and community faculty), including stipends for family trainees
  • University requirements and qualifications to be hired as a core faculty
  • Competing priorities of LEND Guidance-how to integrate family perspective in all priorities (research, practice, evaluation and didactics)
  • Family is still an emerging discipline/profession
  • Promoting credibility of family faculty
  • Tailoring LEND curriculum to meet the needs of families and family trainees-determining best practices
  • Family members as trainees
    • Desired outcomes
    • Modifications and accommodations necessary for family members or self-advocates to be trainees
    • Discipline specific content for family trainees
  • Competing/variety of roles that family faculty plays in needing to represent all families (includes blending of diversity and cultural competence). Families represent their own families with trainees but also represent and train other families.
  • Transforming health care and education-balancing the need to be family-centered with the challenges of families who are not caring well for their kids
  • Need for best practices for recruiting, training and working with families and self-advocates from all populations
  • Reimbursement for family members for talking/discussing
  • Policy/advocacy-including Medicaid
  • How to make materials accessible to all families
  • Not wearing out families and getting an authentic family observation
  • Culturally competent training and materials (especially with increasingly diverse populations and languages)
  • Aging parent population-financial planning for families


4. Role of LEND Family Faculty

The goal for this discussion was to get a feel for the breadth of family faculty roles and a sense for how many people are doing similar roles.

LEND Family Faculty current activities:

  • Curriculum development and implementation-what types of information will be introduced to trainees to insure family-centered care is infused into the LEND curriculum (all)
    • Coursework and related activities such as family mentoring
  • Bring family support/perspective to interdisciplinary teams. (75%)
  • Integrating family experience into LEND Program-Bring family perspective to discussions and decisions. (75%)
  • Involved with clinical or resource programs; as trainers (all)
  • Selection of trainees (40%)
  • Selection of new faculty (5%)
  • Consultant
  • Add "fun, color, and community connection"-provide community links (all)
    • How a family experiences policy
  • Program or Project Coordinator (50%)
  • Family support (50%) [one issue is that family can't bill for their time]
  • Resource Specialist-information and resources (50%)
  • Reviewing and developing written materials to insure family friendly (all)
  • Needs assessment and evaluation from family perspective
  • Bring grassroots perspective
  • Collaboration and capacity building with family networks and projects
  • Information on policy and advocacy-look at how legislation/regulations affect families
  • Supervise and evaluate trainees
  • Involved in research (50%)

Denise Sofka raised the issue of families being presented/viewed as a discipline and said more work needs to be done in this area.

Several participants noted that they could be involved in these activities but are not because of time constraints. Many family faculty members are hired as only a small percentage of an FTE or as a consultant. Concern was expressed about all these responsibilities being taken on without adequate funding. According to the survey of family faculty, the majority of family faculty is part-time.


5. Family Component of LEND Curriculum (Panel Presentation)

Betty Thompson, Virginia-

Virginia is one of the younger LEND programs and is not housed in a big hospital or in the UCEDD. All of the clinics are out in the community, including: a monthly clinic in one of the economically depressed areas of town; clinics at a housing and domestic violence program in a former orphanage; respite care and special school for kids with emotional disabilities or autism; and an autism assessment clinic. They try to have a family faculty member present at all of the clinics.

When working with trainees, the goal is to reinforce that the family has a voice; e.g. in autism clinic wrap-up by asking families what would be helpful to them to have in report.

Annual sibling panel. PT group founded a sib-shop that is conducted by PT trainees each year as a leadership activity. Leadership class on how to empower family as leaders includes grandparents and parents. Pay stipends to family members who are involved in panels. Lend Program happens to be located directly across street from state general assembly so many connections to family advocacy. Handbook of parent-to-parent advice for children who are chronically in the hospital. LEND support for a parent to be on the state advisory panel. Try to include diverse families in programs.

Mark Smith, Nebraska-

Main work is as a consumer advocacy coordinator. Recently wrote part of his FTE into LEND grant to serve as a faculty member. Now have almost two FTE worth of funding so will be hiring an additional family faculty.

Four major aspects of family involvement in Nebraska LEND:

  • Clinically, trainees must select one family and assess the family for needing multidisciplinary input. Assure that interaction is family-centered and multidisciplinary.
  • Students work in clinics as LEND requirement
  • One of the major inputs of family faculty is into didactic curricula. Weekly seminar with emphasis on family issues and relevant policy and legislation. Each student does project on cultural competence.
  • Project DOCC (Delivery of Chronic Care): a curricula for medical students developed by families of children with chronic health care needs, adapted for all trainees. Several practica for trainees related to family-centered care, including shadowing a family.

Jan Moss, Oklahoma-

Unique pieces of family involvement:

  • Family members involved in ID courses, clinics, mentorship for LEND trainees.
  • Used to link a family with a trainee but the focus was narrow. In an effort to expand, developed the family supportive health care network focused on family support and family centered care, which includes protocols for working with family. Also focused on family supportive language-getting away from labels.
  • Find ways for trainees to really understand the family experience.
  • Provide training for families who choose to be involved in these programs and find ways to pay them.
  • Use of Child Preference Indicators interview tools, which look at the child's favorite things to individualize care and support. These tools give families an opportunity to discuss what they need and what they know, how to work best with their child, and how to impart this knowledge to their service providers.

Paula Lalinde, Florida-

Her primary role is Training Director in the LEND/UCEDD; she also chairs her site's interdisciplinary training committee. The Florida Program serves over 10,000 children and has approximately 70 long-term trainees, per year. Parents work as faculty within LEND Program. They will soon have a parent resource specialist working in 4 clinics.

They've developed an interest and strengths survey for all families coming into clinics. Forced to go beyond the medical clinical model. Use strengths to define the ways families can be involved in the program and try to get more families involved.

Highlights of Family involvement:

  • Curricula developed by and about real families
  • Friday noon lecture series for all LEND trainees on leadership and systems of care, families involved in about 70% of these.
  • 8 hour curriculum on understanding family perspectives
  • Address disenfranchised grief
  • Many curricula about and around family issues
  • Qualitative analysis of summary of family experiences from trainees; attitudinal survey pre- and post- family experience.


6. Best Practices for Family Mentoring (Panel Presentation)
**See linkedpacket materials for brief overviews of family mentorship experiences.

Barb Lucas, Wisconsin (overview) -used to match trainees with families for a year-long experience. Now the range is from 10-40 hours spread over the semester. Trainees participate in a family dialogue where they share their experiences and what they are learning from the family. The big debate for this program is how much the trainee learns in limited hours. Trainees say any exposure to family is a meaningful learning experience, but it's experiencing things with a family and understanding those experiences from the family perspective that is invaluable.

Tanya Baker-McCue, New Mexico (overview) -Want trainees to enjoy their typical family experience. In this program, trainees and family negotiate a project together. The goal is for trainees to become the types of practitioners who are incredible listeners to the priorities and needs of the people they serve and empower families to make that information known. An example of one project is that a trainee worked with a child who survived a brain tumor and has processing issues and was having hard time navigating her own bedroom, finding clothes, etc. The trainee spent time helping to re-organize the bedroom so that the child could find her belongings and stay organized. Another trainee is working with a family to develop an accessible community playground.

Carney Derksen, Iowa (overview) -The parents as mentors program is steeped in the principles of family-centered care and seeks to orient trainees in those principles to serve as a base for everything they do in their training program. Want trainees to understand, from the family's perspective, what leads up to a clinic visits, what the visit is like, and what occurs afterward. Expectation is that each trainee will devote 20 hours to the program, generally within a semester.

Elaine Ogburn, Virginia (overview) -Trainees are matched with a family for an academic year and participate in a minimum of 5 visits for a total of at least 10 hours. The family faculty gets to know each family first and touches base throughout the year. The LEND sponsors a kick-off picnic where all the trainees and families meet each other. Each trainee then visits his family in multiple settings and either keeps a journal of the experience or schedules a faculty advisor to come with him on visits for trainees who won't keep a detailed journal. Trainees also learn from each other about their experiences so that they get a wide range of knowledge and exposure to different types of families. Families know about this sharing in advance. One training session about chronic illness, death and grief is conducted early in the academic year so trainees are better prepared if something serious happens with their family.

Q. How do you deal with serious problems, death or a child who is too ill to continue with the mentorship experience?
A. Some programs reassign trainees to a new family, others consider the trainee to have fulfilled the mentorship experience. All noted that, while it's a hard experience, it helps the trainees understand that this is part of the experience with families-that their lives are too busy or emergencies come up and their schedules can vary widely.

Q. USC is beginning this type of program and plans to ask trainees to find their own families because they want them to be able to make family connections and also hope they'll find families less tied into service systems. They asked for feedback on this.
A. Some programs have allowed trainees to select their own families, with mixed experiences. The family is taking on the role of trainer in some ways and sometimes the families may not be aware of the time and commitment and resources this takes if not selected and briefed by the LEND program. It could be a good experience, but it may also lessen some of the learning experience for trainees who already know their selected family.

Q. Do programs pay families for their involvement?
A. One program pays families $400 for four visits with trainees and has made it a priority to pay the families or provide them with a stipend. Approximately 1/3 of the programs present have not been able to provide any type of stipend for working with trainees. Those who do noted that they want to show that they honor and value the family expertise and that a stipend provides a sense of accountability to the learning experience.


7. Family Discipline Trainees (Panel Presentation)

Three of the LEND Programs who admit trainees as Family Discipline Trainees presented overviews of their programs. (see linked PowerPoint presentations)

Fran Goldfarb, CA (PPT); Dennis Stevens, SD (PPT); & Barbara Levitz, NY (Valhalla)

In general, Family Discipline Trainees follow the same LEND coursework as other trainees, including the leadership project. They substitute the family mentorship experience for participating in presentation on family perspective and involvement to other trainees.

Although it varies between programs whether trainees admitted as Family Discipline Trainees have advanced degrees in other fields, the discipline is reserved (at all programs) for individuals whose outcome goal is to be more involved in family leadership work, not for people who are primarily interested in another field and also happen to be a parent or family member of a person with a disability. All programs consider the contributions the candidates could make and their potential for future leadership as selection criteria.

All three programs offer a stipend to the Family Discipline Trainees and seek other means of support for them. Many trainees have authorized release time from their full-time employment to participate in LEND training.

Fellows have said that it is great to be able to share their family perspective and experiences with other disciplines and trainees in other disciplines feel the family trainees add a better understanding of families from real perspective, making the program less strictly clinical. It also gives trainees an ongoing resource and contact.

Lessons Learned: It's very important for the trainees to identify self early on as a family trainee, rather than in any other discipline in which they have a degree.

Several programs expressed interest in exploring having self-advocates and individuals with disabilities as trainees as well.

Q. What modifications have been needed to accommodate family trainees?
A. One family member was not a native speaker of English and needed the family faculty to spend time reviewing the reading with her. Other accommodations have been around IEPs, children getting sick, etc. Sometimes the Family Trainees just need additional time to complete the program. The ability of Family Trainees to keep up with the demands of the program hasn't been an issue, but their confidence in their ability to do so has needed some bolstering.

Q. What is the clinical experience for the family trainees?

  • SD-Participate in regular clinics as parent advocates and observers. Trying to instill role of parent advocate even more but there are some administrative hurdles. Partners in Policymaking course also counts for some of those clinical hours.
  • NY-Looking at ways for the family fellows to provide a family support role in clinics.
  • CA-They participate as members of the feeding team and the access to care experience (is a training clinic, not a treatment clinic). They have the same requirements as other trainees to coordinate the care for a family and prepare the cover letter to the team reports that provides family friendly language appropriate to that family, reiterates recommendations from teams, and details the strengths of the family. They initially considered having the family fellows to do all of these letters but decided that all trainees need the experience.

Q. What's the job market/market niche for these graduates?
A. We are trying to develop the family specialist as more as a professional field. In some states there are opportunities to hire family members to do service coordination and early intervention. As a group, we need to look increasingly at roles for family members in the developmental disabilities field. As services improve and increase over time, there will be an increased job market. Currently varies from state to state-in some areas the role is still primarily advocacy. One role of this group could be to generate employment areas and needs for family members.

Q. Does the role of the family resource specialist or family faculty overlap with social work?

A. No. They may look similar from the outside, but they have very different roles in working with the family and throughout the program. The role of a family specialist is to determine what the parent needs in order to provide what the child needs. One program noted that a way to secure additional funding for family trainees is to become an AmericCorps site.


8. Wrap-up/Next Steps

Individual or at Center:

  • Everyone post their bios on the message board
  • Subscribe to Family Faculty list and continue use of message board (contact Lisa at [email protected] for assistance)
  • Consider mini exchange program across centers

From/With Central Office:

  • Ensure that LEND Directors are aware of this meeting (completed)
    • Generate strong support
  • Get packets and info. to LEND Programs not represented today
  • Develop opportunities to network with COLA
    • Some discussion about whether COLA is the most appropriate council for family faculty involvement or whether another council should be considered or even the creation of their own.
    • Perhaps link to ID Council. General feeling that the group fits better there. Think of self more as part of ID team, don't necessarily identify with COLA
    • This will need more discussion in the future to determine where best the overall goal of family involvement may be served best.


  • Family faculty on site review teams and providing input on guidance (more for ADD)
  • Continuing presentations on this project; [e.g. at Alliance for Full Participation Conference-plug into leadership conference.]
  • Continue developing this network
  • Recruit younger families/emerging leaders
  • Increase diversity in family faculties and trainees (and other core faculty)
  • Explore ways to develop the family as a discipline/profession
  • Emphasize need for more family faculty and resources


  • Journal article-process, learned, outcomes, history
  • Develop best practices and core competencies
  • Electronic repository of the resources available through this group, cataloged, etc. (could this be through NIRS or Add-up?)
  • Best Practices Models and work collaboratively to do research on these models
  • Take this work and infuse it through the other (non-LEND) training programs
  • Look at where employment and placement opportunities might be for family specialists
  • Resource manual of either family mentorship or family trainees (esp. for sites still developing family programs)