All Families Matter

America stands for the ideal that everyone deserves personal freedom, respect, and equal opportunities. As a parent and in my career as a human rights advocate, I discovered the best practices of Family-Centered Care. Knowing and advocating for these principles will create partnerships and positive outcomes within systems to ensure that All Families Matter.

Not All Families Are Treated Equally

If not for my only child’s chronic and progressive physical disability and incurable disease, I would have never known the deep and lasting pain of discrimination.

I think most parents and guardians caring for children or adults with lifelong disabilities see how their loved one either brings out the best or the worst of some of the medical and educational professionals working with their family.

I wrote about the worst experiences in Diagnosis And Death Certificate, Preschoolers With Special Education Needs, Four Year Diagnostic Process, and the Jailbait Advocate Part 1 (5-part series). On the positive side, check out the Muscular Dystrophy Association post.

Excuses Are Not Solutions

I cannot tell you how many times I heard, “But Mrs. Fuller, we have all these other children to take care of.” My response was, “Yes. And one of those children is my son.”

Have you heard that same tired excuse when you bring up the concerns for your child? If you know about Family-Centered Care principles, you can decrease anxiety and emotional distress and improve your mental health.

A laptop screen showing a woman using a wheelchair with her two children next to her and a second photo of a teacher working with five children of different cultures.

Families are the core of either our universal spiritual advancement or our universal spiritual suicide. So listen up, Professionals, and all those humans in high places with the authority to make these best practices a reality for all families.

My Ten Favorite Family-Centered Best Practices

Educate yourself and honor the legal rights of children and adults with or without disabilities and the rights of their family members.
If parents are expected to implement a plan, they are the center of it and must be involved in developing the plan.
Respect the parents’ expertise and value them as equal partners to ensure the best and most appropriate services for their child and family.
Parents are wonderful allies, not adversaries, with vital information to share about their children.
Respect the racial, cultural, ethnic, religious, spiritual, and socioeconomic diversity of families and work with all without judging.
Acknowledge and value the family’s strengths, daily challenges, hopes, and dreams for the future.
Listen with an open mind, respect families’ priorities and perspectives, and understand their changing needs.
Parents are the lifelong supports for their children, while professionals working in systems come and go.
Parents want to make informed decisions regarding their children, so please provide all the options available regarding complicated issues.
The dynamics of families are unique, and they have different coping styles.

An interviewer asking a young man in a wheelchair, "Do you prefer Handicapped, Disabled, or Physically Challenged?" The young man answers, "Hayes would be fine." It is important to always put the person first-not the disability.

Five Simple Requests To Professionals

Use the Ten Family-Centered Care best practices daily and see how your relationships with the families you work with improve significantly.
Implementing the laws is not the responsibility of the parents or family members. Parents should not have to hire attorneys to keep their children safe and educated in their community public schools. When you see an injustice, immediately speak out about it.
Parents dealing with caring for a child with a shortened life expectancy deserve to lovingly embrace every moment with their child. They should never have to waste precious time in battle with school districts or insurance companies. Believe in families and make willingness the foundation for all suggestions, programs, and activities.
Please do the right thing: show compassion and treat children and parents how you want your loved ones to be treated. Think carefully about any words you will use to break devastating news or when delivering negative information about a child.
You must show respect to get respect. Always remember that parenthood and service to others are the most important work any of us ever do.

Thank you for caring about all families with four graphics. One with a group of children showing diversity. One with a group of teachers. One with a family walking hand in hand. One with a group of doctors.

Resource

For additional information about Family-Centered Care, please check out Family Voices https://familyvoices.org.

Tough Cookie Tip: I encourage you to use the Family-Centered Care best practices when working with doctors, educators, or other professionals involved in your family’s life. Success is all about creating respectful relationships and partnerships. Remember to stay focused on the positive outcome you want for your child. Don’t let knee-jerk emotions and anger get in the way.

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2 thoughts on “All Families Matter”

Janet November 8, 2024 at 1:40 pm


I remember that story you told me about Hayes answering with call me Hayes! Maybe the generations after us will have more compassion to give
LORI DEANDA November 25, 2024 at 6:14 am


Every school should post your best practices on the wall of every classroom, cafeteria and office. Thank you Marilyn for being a dedicated advocate.