Effective Relationships with Teams

Limiting Potential in a Risk-Averse System

Author

Cheryl Dougan is an author and mother to Renzo, a man with anoxic brain injury who receives support from direct support professionals in Bethlehem, Pennsylvania.

A man with light skin and curly brown hair is standing outdoors on a dirt path surrounded by a lush forest. He is wearing a black shirt with white trim and is leaning on a wooden fence, smiling at the camera. The path is lined with trees, and sunlight filters through the foliage, creating a serene and natural setting. He is standing with his hands on a fence.

Renzo is standing, using only the support of the fence.

Over a decade ago, I wrote an email to Joe Macbeth, President of the National Alliance for Direct Support Professionals:

As a parent of a son with significant intellectual and physical disabilities caused by cardiac arrest and subsequent brain injury at age 14, I hold high regard for the DSPs who have supported his needs … They have built loving and supportive relationships with him, some lasting 12 to 13 years. I feel I can depend on them to be there for my son, should anything happen to my husband and me. Their commitment began during the years when I served as the employer of record, helping my son live a self-determined life outside of an agency structure laden with regulations and paperwork.

I sent this to Joe after reading the NADSP Code of Ethics on Person-Centered Supports:

As a direct support professional (DSP), my first allegiance is to the person I support; all other activities and functions I perform flow from this allegiance.

Furthermore, as a DSP, I will advocate with the person I support and others when the demands of the system override the needs of those I support, or when individual preferences, needs, or gifts are neglected for other reasons.

This particular ethic continues to define the kind of direct support professionals we want and need for our son, Renzo, now 41. They have made all the difference in helping him defy the initial prognosis that he would likely remain in a persistent vegetative state. After two months in the hospital, he was discharged home when another doctor concluded that there was no proof he had a mental life. They suggested we place him in long-term care. Instead, we brought him home to a hospital bed set up in our dining room. He was tube-fed, incontinent, and couldn’t even smile. Still, we needed to be with our son and do everything possible to help him improve. My husband, Tony, put it best: “Our job as parents is to help our son achieve his full potential. His potential has changed, but our job remains the same.” We set to work.

Person-Centered Planning was key to envisioning Renzo’s future based on our understanding of who he was before his injury: someone passionate about music (’60s classic rock and jazz) who thought about becoming a pediatrician, who loved school and learning, enjoyed athletics, traveling with his parents, and spending time with friends.

I learned everything I could about Renzo’s newly acquired intellectual and physical disabilities and the complex system of services and support upon which his life would depend. We needed to let go of our expectations about who Renzo might have become, so we could fully embrace who he is now. Person-Centered Planning was key to envisioning Renzo’s future based on our understanding of who he was before his injury: someone passionate about music (’60s classic rock and jazz) who thought about becoming a pediatrician, who loved school and learning, enjoyed athletics, traveling with his parents, and spending time with friends.

Two individuals with light skin are seated at a desk in an office-like setting, working with pink paper forms. The person on the left, a woman with short brown hair, is wearing a blue patterned top and smiling at the camera. The person on the right, a young man with curly brown hair uses a wheelchair, is wearing a blue plaid shirt and smiling broadly. The desk has stacks of papers and a cardboard box containing files, and the background includes beige walls and a wooden door.

Jenn and Renzo working at Martin Guitars

The Promise of the Future

Following the goals set in Renzo’s Plan, his DSPs supported him at Martin Guitar Factory for 20 years, helping him to do clerical work. Recognizing Renzo’s affection for children, he also volunteered with preschoolers with disabilities for 14 years. He audited classes at our community college to connect with peers his age and enhance his cognitive skills. He even enrolled in a dance class to exercise and, more importantly, socialize with women his age. We trusted his DSPs so completely that in 2005, we felt confident moving Renzo into a house of his own near us. Renzo was maturing into an adult and living an “everyday life” typical of his peers. It’s been a long and worthwhile journey, made possible by a dedicated team of DSPs.

Everyday Life, Values in Action

“Everyday Life, Values in Action” is Pennsylvania’s core framework for supporting individuals with intellectual and developmental disabilities. It is based on the idea that people with disabilities should be able to live everyday lives like other citizens, with the support of their families and friends: an everyday life where people can be a member of the community, contribute to society, and have their rights as a citizen fully respected. These freedoms are the vision for Pennsylvania’s system of services and supports—to “value what is important to people with disabilities and their families, who are striving for an everyday life.”

Please note the emphasis on families and friends—those who genuinely know and care about Renzo. DSPs can play a key role in maintaining and strengthening those bonds.

Tony and I worked closely with Renzo’s DSPs in those early years, sharing the knowledge and skills we had acquired since his injury. They participated in his rehabilitation programs so they could assist him at home as he worked to regain his strength, mobility, speech, and cognitive skills. Some were physically capable enough to assist him in walking with 1:1 support, even up a flight of stairs. Others excelled in working with Renzo to relearn how to eat, speak, and participate in self-care. They worked as a team, sharing household chores and cooking.

Some DSPs remained for as long as 15 to 20 years, forming an extended family that continues to this day. Together, Renzo’s DSPs helped him surpass all expectations.

Four people are enjoying happy hour at an indoor/outdoor restaurant ocean side. Renzo is setting and holding a fruity drink with a pineapple and cherry on top, two people stand to the right, and with Hawaiian leis, one holds a martini. The fourth woman is across from Renzo, holding a fancy glass of water and supporting his glass. They are smiling and looking at the camera.

Renzo enjoys happy hour with friends while at the Pacific Rim Conference on Disabilities

DSPs became effective advocates. One DSP even accompanied Renzo and me to Hawaii for the 2006 Pacific Rim Conference on Disabilities to share his story of everyday life. Others assisted Renzo in presenting his story at the 2015 Advocacy Alliance Self-Advocacy Day and on behalf of DSPs at a statewide provider conference in Pennsylvania. One amazing DSP appeared with Renzo, serving as a spokesperson for DSPs in the Fix the DSP Crisis.

Video from the Web version of this publication:

Fix the DSP Crisis (2019): https://www.youtube.com/embed/vbWG5MV27JM?feature=oembed

Yes, when given the opportunity, DSPs are much more than just caregivers. You have a voice!

Yes, when given the opportunity, DSPs are much more than just caregivers. You have a voice!

Can the Everyday Life we built together be sustained for Renzo’s lifetime?

The Future of the Promise

As I approached my 70th birthday in 2017, it was important to establish a lasting support structure for Renzo that extended beyond my ability to remain involved. Reluctantly, I chose Licensed Regulated Residential Services, which is overladen with regulations and paperwork. Due to Renzo’s significant support needs, his home is now defined as a “residential group home for one.” This category offers more stable financial benefits and allows Renzo to stay in his home.

We hoped the first licensed provider agency we chose would continue what we had established. Unfortunately, they failed to adequately train and supervise their DSPs on the essentials of Renzo’s daily care. As a result, his health declined significantly. He lost 18 pounds, suffered from constant urinary infections, and was hospitalized for the first time since his injury with aspiration pneumonia, likely due to poor dental hygiene. That provider was found to be negligent.

We then chose a different provider, an excellent agency dedicated to training and supporting DSPs and advocating on their behalf. Renzo’s basic needs for nutrition, hygiene, medication management, consistent staffing, and more are well met. However, the agency's rigid structure does not allow for our active involvement as parents, despite our knowledge and expertise gained over Renzo’s lifespan.

We are no longer allowed to train or instruct Renzo’s DSPs. DSPs cannot contact us directly without going through their supervisor. DSPs are no longer permitted to provide the level of physical assistance that was essential for his significant improvement. DSPs cannot help Renzo practice walking or even assist him with simple knee lifts while he holds onto a wall-mounted bar. The provider fears Renzo might fall or that his DSP might get injured. I worry their concern about liability outweighs their concern for Renzo’s health and fitness. Without sufficient daily support to maintain physical fitness, Renzo’s muscles have atrophied, and he is experiencing increased joint pain and bone density loss. Renzo can no longer walk even a few feet without pain.

The Challenge

It is extremely difficult for many family members to entrust the care of their loved ones to a provider agency, essentially strangers whose obligations are not only to the person receiving support but also to the system, which has multiple regulations, mandated training, and ever-changing service definitions. In such a system, parental involvement, when possible, is essential to ensuring their loved ones’ needs are met until trust is established.

We learned to trust Renzo’s DSPs by working closely with them. They offered a new perspective and taught us so much about our son. DSPs understood the idea of reasonable risk, and once we understood their individual strengths and limitations, which were assessed during training, they were free to assist Renzo in any way they felt able. Renzo flourished in their care.

Renzo smiles as his DSP paddles their two-person kayak from the back seat. The lake has a few ripples. Renzo is in the front seat, wearing a black water ski PFD, black t-shirt, and tan shorts. The man paddling in the back is wearing a white tank top, black shorts, and sunglasses.

There is nothing better than a relaxing Kayak ride on a summer day.

Renzo is working out at the gym on equipment that he uses his feet to peddle while in his own wheelchair. Renzo is wearing a black and gray speckled hooded sweatshirt and black sweatpants. He has short dark brown hair, and mustache and beard.

Renzo stayed strong by working out in the gym.

Two men are outside a house on a spring day. Renzo is on a blue three-wheel bike. He is wearing jeans, a red and black jacket, and has a black baseball hat on backwards. The other person is standing beside him. They are both looking straight at the camera. He is wearing black jeans and a sweatshirt with a white turtleneck and sunglasses.

Renzo taking a ride on a cool spring day with DSP Ed Kelly.

Now, Renzo is prohibited from engaging in activities he once enjoyed with his DSPs, such as riding his three-wheeled bike in the neighborhood, kayaking, or simply walking up a few steps to enter a friend’s house. It’s all deemed too risky. The dream of living an Everyday Life, one that includes the dignity of risk for both him and his DSPs, is disintegrating.

I have to believe that agencies want to do a better job supporting the Everyday Lives of the people they serve. Is the system limiting everyone's possibilities, DSPs, family members, and providers alike?

How is it possible for you as DSPs to adhere to the first NADSP Code of Ethics, confirming that your first allegiance is to the person you support? How can you vow to:

Advocate with the person I support and others when the demands of the system override the needs of those I support, or when individual preferences, needs, or gifts are neglected for other reasons.

I wish I knew the answer. The best I can do as a devoted mother is to continue advocating for my son and for direct support professionals.

A system driven by fear rather than supporting peoples’ lives MUST change. You are our hope for the future as you partner with family members and each other to advocate with the people you support.

References

Frontline Initiative. (2016). How Close Can We Get? A Look at the NADSP Code of Ethics and How it Supports Person-Centered Services in a System-Centered World. Frontline Initiative, 14(1).

Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR). (2019). Fix the DSP Crisis. [video].

Pennsylvania Department of Human Services. (2021). Everyday Lives: Values in Action , 2021. Pennsylvania Department of Human Services, Office of Developmental Programs.

National Alliance for Direct Support Professionals. (2016). The Code of Ethics.

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