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One family's journey: Medical Home and the network of supports it offers children and youth with special health care needs: parent partners.

Baby Anjali was a new patient on the practice's panel. The care coordinator added her name to the list of patients for discussion at the pediatrician's weekly case conference meetings.

Prior to the meeting, the care coordinator notified one of the parent partners in the practice about a new premature baby to be discussed at the case conference. The parent partner, a mother to a now eight-year-old son, knew what it was like when her son spent two weeks in the Neonatal Intensive Care Unit (NICU) after being born prematurely. She shared her concerns with the care coordinator about Anjali and her family to facilitate discussion at the meeting. Anajli's condition was complex and the parent partner knew from her own experience the practice could help this family cope with the many people coming into their home and any feelings of frustration. Moreover, she recalled how unprepared she and her husband felt when they took their son home from the NICU eight years earlier . The parent partner remembered speaking to another parent with a premature infant eight years ago and the invaluable support she provided.

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The case conference got started after the pediatrician finished seeing the last patient. The care coordinator discussed some of the parent partner's suggestions for things to discuss when Amita and Samir took Anjali in for her weight check the following week. They agreed the questions provided some wonderful thoughts to include in their discussion with the family at the visit.

Baby Anjali, Amita, and Samir arrived on time to the pediatrician's office the following Wednesday. While they were nervous about driving to the office, they were even more nervous to see if Anjali was gaining weight. The nurse took them back to the exam room where they carefully undressed Anjali and placed her on the scale. Terrific! Their little Anjali had gained 8 ounces since her discharge from the hospital last week!

The pediatrician and care coordinator met them in the exam room to go over Anjali's growth and talk about the family's first week at home. Amita and Samir began to express their concerns about their baby and how to cope when Samir returned to work. Amita mentioned she made appointments for seven different specialists Anjali needed to see in the next few weeks but was worried how she would manage Anjali by herself in the car. Amita told the care coordinator that her mother was coming from India to help her with Anjali but would not be arriving for another two weeks.

The care coordinator felt Amita was a caring and competent mother but knew she was concerned about all of her responsibilities. She spoke to Amita and Samir about talking to another parent from the practice who had a premature infant. This parent was working with the practice to support parents like Amita and Samir by both talking to them about their own experiences but also linking them to community resources. The care coordinator mentioned the role of this parent was called a "parent partner." Engaging and working with parent partners was one aspect of the practice's participation in the medical home program. She went on to explain all the benefits of having a parent partner in the practice. Parent partners expanded their knowledge and skills about families' needs and priorities. Some parent partners helped the practice develop folders to give to parents about the scope of services provided by parent partners as well as phone numbers for services Anjali may eventually need.

Amita and Samir were very excited about talking to another parent who had been through what they are experiencing now. They agreed to provide their phone number to the care coordinator so the parent partner could contact them. They left the office wondering how soon she would call!

On the way home from the doctor's office, Amita read to Samir from the folder as he drove. She relayed the history of how the medical home initiative got started and how parent partners are a critical piece in the practice's approach to family centered care. She continued to read to Samir how many states were working on medical home programs. They all were using parent partners but in various ways. Some practices had parent partners as part of their staff providing support to the families visiting the practice with their children who have special health care needs; others had groups of volunteer parents working on things like resource nights, parent networking, information bulleting boards and care binders. "I wonder what a care binder is?" Amita said. "We can add that to our list of questions for the parent partner when she calls!"

As Amita and Samir sat down to dinner, the phone rang. To their surprise, the voice on the other end of the phone introduced herself as the parent partner for their pediatric office. She asked if it was a good time to talk and Amita told her they just started eating dinner and following dinner they had to feed Anjali. Could they possibly talk after that? "Absolutely!" replied the parent partner.

At 9:00 PM, the phone rang again, and this time Amita and Samir knew who was calling. They each picked up a phone so they could both hear what the parent partner was saying. First, she told them more information about the medical home initiative and the value of parent partners. Furthermore, she stated practices with parent partners are striving hard to provide family centered care. She felt empowered to share her experiences and expertise with: other parents of children and youth with special health care needs, pediatricians, care coordinator, and office staff because she has "walked the walk." The parent partner also said she feels like an equal team member in the practice. All members of the practice listen to her suggestions and ask for help with families with children with new diagnoses. Amita and Samir learned she is one of several parent partners in the practice and that she too had a child who was born prematurely. Her son was now in second grade, but she remembers how alone she felt when they first took him home from the hospital. Amita and Samir began to tell her about their own fears for their daughter and how they would manage to care for her properly. They knew they had wonderful support at the pediatric office but still had concerns.

Next Amita and Samir asked if there were other parents at the practice with children like Anjali--maybe even one who practiced Hindu. They thought talking with another Indian family who shared similar traditions might assist them--especially when Amita's mother arrived. Amita told the parent partner that in India, grandmothers play a vital role in the care of children, and they wanted her to understand everything that was happening to Baby Anjali. The parent partner said there was, in fact, another family from India she they could talk to and she would be happy to facilitate a conversation.

Finally, Samir asked the question Amita brought up in the car. He asked what a care plan binder is and how it is used. The parent partner explained this was an idea developed from their parent partner group at the practice. The care plan binder was given to families with children and youth with special health care needs. The care plan binder contained information about the child's medical history, schedules of upcoming appointments with specialist contact information, letters of medical necessity, copies of prescriptions, and medication and feeding instructions. She told Amita and Samir the binders are completed with the family, incorporating their input. At Anjali's next appointment in the pediatric office, they would schedule a time to meet with the care coordinator, parent partner and pediatrician to begin Anjali's care plan binder. Amita asked if her mother could come to the care plan binder meeting and was told other family members are always encouraged to attend. She told them to start picking out some of their favorite pictures of Anjali to be included in the binder. Amita and Samir thought this was a wonderful idea and would help keep them organized.

The following week, Amita was sorting through the many, many pictures they had taken of Anjali, trying to decide which to take to the care plan binder appointment, when she heard the mail drop through the mail slot onto the floor. She put the pictures aside and went to get the mail. On top of the pile was what looked like an invitation. She opened it and was surprised to see she and Samir were being invited to a resource night being held at the pediatrician's office next month. The invitation listed some of the groups who would be present. Amita was very excited and called Samir at work to inform him about this exciting news.

Next month Amita and Samir attend the resource night with Amita's mother and Baby Anjali. They learn about many resources right in their own community!

For more information on Medical Home, please visit the National Center of Medical Home Initiatives for Children with Special Needs at www.medicalhomeinfo.org. For a list of references that accompany this article, please make request to jhollingsworth@eparent.com.

Sabra Townsend, BSIE, parent of a 10-year old-child with special healthcare needs, serves as a community services coordinator with the Philadelphia Dept of Public Health. Serving in this position for 5 years, Sabra provides information, referral and consultation services to families in Philadelphia. She also serves on the Family Advisory Council of The Children's Hospital of Philadelphia.

Gina Pola-Money is the parent of five children two of which have passed away one at age 5 and the other at age 17 from a rare dystrophy. She is the Family Involvement Coordinator for the Utah Bureau of Children with Special Health Care Needs which includes the Utah Collaborative Medical Home Project and the Director of Utah Family Voices Health Information Center.

Molly Gatto, is Associate Program Director of the Pennsylvania Medical Home Program (EPIC IC) at the PA Chapter of the American Academy of Pediatrics. She has been working in health care for over 20 years, in practice, insurance and currently is working on her masters in Healthcare Administration.

By Sabra Townsend, BSIE, Gina Pola-Money, Molly Gatto

PARENT PARTNERS

Selecting Parent Partners

* All practice team members need to understand and embrace the idea of having parents of a child/youth with special health care needs (CYSHCN) as equal partners.

* Discuss the parental traits, qualities, and characteristics that would compliment the practice team.

* Discuss potential parent partners and determine if they would be a good match for the practice team.

* Working on a team where all members are equally valued and respected may be a new adventure for all involved. Think about parents who have sought you out for help but who also have shared their ideas and resources. Which parents have taught you the most about raising and caring for a CYSHCN? Teams develop as trust grows among team members; remember this may take time.

Parent qualities

* Has a child or youth with special health care needs

* Can look beyond their own issues and concerns and consider ideas from the perspectives of other families with CYSHCN.

* A sense of humor

* Good listener and effective communicator.

* Representative of diversity in the community

* Accessed a wide variety of services, resources, supports and providers (specialists, therapists)

* Have knowledge of statewide and local family and disability organizations

* Understand that this is not a support group and have energy, enthusiasm to participate

* Commit the time necessary for meetings, assignments and follow up. Teams embracing partnerships will find a time to meet that accommodates everyone's schedule.

Engaging and Maintaining Parent Partners

* Invite parent of CYSHCN to a participate in a focus group or resource night

* Respect the parent as a professional

* Provide small stipend for team meeting attendance

* Reimburse or child care, mileage and tolls

* Rotate meeting days and times

* Offer the option to call into the meetings

* Partner the parent with another parent partner

* Excerpted from Parent Partners, Creative Forces on Medical Home Improvement Teams, A Guide for Parent and Practice "Partners" Working to Build Medical Homes for Children with Special Health Care Needs, p. 9-10, Center for Medical Home Improvement, 2003

* http://www.medicalhomeimprovement.org/assets/pdf/CMHI_PP_Guide.pdf

DEFINITION OF FAMILY-CENTERED CARE

Assures the health and well-being of children and their families through a respectful family-professional partnership.

Honors the strengths, cultures, traditions and expertise that everyone brings to the relationship and;

Is the standard of practice which results in high quality services.

PRINCIPLES OF FAMILY-CENTERED CARE FOR CHILDREN

* The foundation of family-centered care is the partnership between families and professionals. The following principles are essential in this partnership:

* Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.

* Everyone respects the skills and expertise brought to the relationship.

* Trust is acknowledged as fundamental.

* Communication and information sharing are open and objective.

* Participants make decisions together.

* There is a willingness to negotiate.

BASED ON THIS PARTNERSHIP, FAMILY-CENTERED CARE:

* Acknowledges the family as the constant in a child's life.

* Builds on family strengths.

* Supports the child in learning about and participating in his/her care and decision-making.

* Honors cultural diversity and family traditions.

* Recognizes the importance of community-based services.

* Promotes an individual and developmental approach.

* Encourages family-to-family and peer support.

* Supports youth as they transition to adulthood.

* Develops policies, practices, and systems that are family-friendly and family-centered in all settings.

* Celebrates successes.
COPYRIGHT 2007 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 2007 Gale, Cengage Learning. All rights reserved.

Article Details
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Title Annotation:PART THREE
Author:Townsend, Sabra; Pola-Money, Gina; Gatto, Molly
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Nov 1, 2007
Words:2259
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