An Interview with Marilyn Price Spivak

ABOUT MARILYN PRICE SPIVAK

Marilyn Price Spivack is a cofounder, past president of the National Head Injury Foundation. She is a Neurotrauma Outreach Coordinator at Spaulding Rehabilitation Hospital/Boston.

Since founding the National Head Injury Foundation, what kinds of advances have you seen in supports and services for individuals with brain injuries and their families?

There have been many advances across the continuum of care depending on the state in which one resides. The systems of triage, trauma services, acute care, diagnostic technologies, neuropharmacology and rehabilitation have so advanced. Many more lives are saved every day and severity of disability for many has decreased which has enabled individuals to regain greater function. However, this is a cautious statement since recovery depends upon many factors, including where in this country is one injured? Or what is the availability and access to the state of the art of treatment for TBI? Or what type of insurance or lack of does the individual have? Specifically concerning to me is the access to acute rehabilitation wherever one might be injured, and of the resources the patient might and might not have to allow such access. All needed services are shrinking along with length of stay. When the specialized TBI programs in acute rehabilitation diminish, so do the teaching, training and research opportunities diminish. Then where will the needed specialists be if training is so limited? We just can’t afford to let that happen. Then the final question to be asked, what will happen to all our specialized brain injury services if Medicaid and Medicare are the only source of funding?

What has your daughter, Debbie, taught you over the years?

So very much! She leads me! She is among the pioneers of people who have survived in a period when very few did. Deb, like Carolyn Rocchio’s son Tim, had the best available care. From a small community hospital where we were told she should die, we took charge and had her transferred 10 hours later to the Massachusetts General Hospital. Time was not on our side, there were no helicopters to transport emergently back then and trauma care was not what it is today. (As you know, my son was killed 18 months later and we had another issue to address, no appropriate triage.) However, we have all benefited from what I learned from Deb. Her experiences and her needs, family needs, drove the creation of the National Head Injury Foundation (NHIF). Every decision I made in leading the NHIF was based on Debbie’s needs, my frustrations and the directions and services that were so lacking and/or non-existent altogether. The first lesson I learned was the glaring lack of professional and public understanding of head injury. Very few specialized services had even been created for individuals who sustained severe head injuries. Sadly, there was little need at that time since few survived and for those who did there was little or no hope. My daughter was among them.

You’ve been called the “God Mother of Brain Injury”. If you had a magic wand what would you do today to improve the lives for people with brain injuries and their families?

It is a very long wish list and I do not have a platinum wand. But first, I would like to know how that there will be a stronger coordinated advocacy effort to speak to the broad issues and challenges caused by TBI, BIAA, NASHIA, NABIS or ACRM cannot be as effective as its potential without increased numbers of voices and sufficient resources to carry out a sustained and persistent effort. While each of the organizations named above has its unique mission, in the world of advocacy we need a strong unified voice. We need to all “speak as one.”

Secondly, access to the right services and supports in a timely basis is critical to good outcomes. I have witnessed daily over the past 12 years at Spaulding Rehabilitation that early interventions, expertise, technologies and time really make a difference in the future lives of those so injured. It is painful to know that most do not have such access to the fine specialty rehabilitation facilities.

Thirdly, increasing community-based supports, residential and independent living services, and the TBI Club House models need to be funded by Medicaid and HCBW waivers instead of day programs that are not designed to serve the needs of individuals months and years after TBI. There should be a life after rehabilitation which allows people to reach their goals in an environment that fosters confidence, growth and social networks. Programs like Community Works in Kansas, or housing opportunities as developed by Accessible Space, or case management services over a lifetime for those without family advocates.

Fourthly, an appropriation level that makes sense at the federal level so that states can build infrastructures to serve people better. We also need a coordinated effort within government to enhance and coordinate research opportunities and encourage this generation of young talented clinicians and researchers to stay in the field.

Fifth, we need to examine the issues that impact children and adolescents with brain injuries and consider the impact of brain injury as a chronic disease process as young people get older.

I appreciate the invitation to be interviewed and I want to thank all who stood with us in building this movement and I want to encourage this current generation of clinicians to get involved with the people whose lives you will change and have changed already. It does make a difference! Just remember this fact that if your mentors and teachers didn’t join us in the 1980’s, there might not be the field you work in today. We need everyone’s help to keep moving forward!