October is Spina Bifida Awareness Month. For families in Baraboo, Reedsburg, Portage, Wisconsin Dells, Sauk City, and throughout Sauk and Columbia County, this month is an opportunity to address something that does not get enough attention in the broader Spina Bifida conversation: what happens to the care team as the person with Spina Bifida moves through adulthood and into middle and later life.
For most of childhood, the care team is assembled around the child. Pediatric specialists, school-based therapists, coordinated clinic visits, and involved parents form a structured, well-organized support system that, while imperfect, is deliberately built for the purpose. Then adulthood arrives. The pediatric team transitions the patient out. The school services end. The coordinated clinic model gives way to a fragmented adult healthcare system. And the informal care network — the parents who have provided daily support for two decades — begins, slowly and then more rapidly, to age alongside the person they have been supporting.
What adults with Spina Bifida need from their care team changes significantly as they age. Understanding those changes, and building a care team that can respond to them, is one of the most important things a family can do for a loved one with this condition. This post is a practical guide to doing exactly that.
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For a child with Spina Bifida, the care team is often centered in a multidisciplinary clinic where specialists communicate with each other and with the family in a coordinated way. For an adult, the care team is almost always more fragmented, more self-directed, and more dependent on the individual and their family to hold together.
A comprehensive adult care team for someone with myelomeningocele typically includes a urologist with neurogenic bladder experience, a neurosurgeon for shunt monitoring, a physiatrist or rehabilitation medicine specialist, an orthopedist, a primary care physician who understands the complexity of Spina Bifida, and — for many adults — a mental health provider. In a smaller community like Baraboo and the surrounding Sauk County area, some of these specialists may require travel to Madison or another regional center, which creates its own logistical and financial burden.
In-home care — both skilled nursing and personal caregiving — is not a peripheral member of this team. For adults with Spina Bifida who receive in-home support, the nurse and caregiver who are present in the home regularly are often the members of the care team who have the most current and most accurate picture of how the person is actually functioning day to day. That position carries real responsibility and real value.
Move from reactive to proactive monitoring. The pediatric care model tends to be organized around acute events — a shunt revision, a tethered cord release, a pressure injury that required hospitalization. Adult care for Spina Bifida needs to shift toward proactive monitoring that catches the secondary complications of aging before they produce acute events.
Upper extremity deterioration from decades of wheelchair use does not announce itself with a dramatic injury. It accumulates — shoulder pain that is manageable, then persistent, then limiting, then debilitating. Kidney function changes from neurogenic bladder that is slightly less well managed than it was at thirty does not produce symptoms until significant damage has occurred. Pressure injury risk that was adequately managed with the habits of youth becomes higher risk as skin elasticity decreases and tissue tolerance changes with age.
A care team that is monitoring proactively — scheduling the urodynamics, assessing upper extremity function at regular intervals, examining skin at every visit, asking the questions that identify gradual change before it becomes crisis — is providing fundamentally different and more valuable care than one that responds to problems after they have become serious.
For in-home care, proactive monitoring means that the registered nurse who oversees care is establishing and documenting baselines, reviewing those baselines at regular intervals, and communicating changes to the treating physician before they reach the threshold of crisis. It means caregivers who know what this person's skin, bowel function, energy level, and mood look like on a normal day, so that departures from that normal are recognized and reported.
Develop expertise in the specific secondary conditions of aging with Spina Bifida. The secondary conditions that accumulate in adults with Spina Bifida are not the same as the secondary conditions of general aging, and a care team that treats them as interchangeable provides inadequate care.
Upper extremity overuse injury in a lifelong wheelchair user is different from rotator cuff injury in a sixty-year-old who has never used a wheelchair. Neurogenic bladder in a fifty-year-old with myelomeningocele is different from age-related bladder changes in the same person's age peers. Pressure injury risk in someone with lifelong impaired sensation is different from pressure injury risk in a person who recently lost mobility due to illness or injury.
The care team needs to include members who understand these distinctions — who know the Spina Bifida literature, who have experience with this population, who do not treat the person's lifelong expertise about their own condition as irrelevant. Finding those providers in a smaller community like Baraboo sometimes requires connecting with specialists in Madison or the broader region, and the in-home nursing team can be an important bridge — helping the family navigate the specialist landscape, communicating between providers, and ensuring that the coordination that the pediatric clinic model used to provide is maintained in some functional form in adulthood.
Communicate across the care team consistently. The fragmentation of adult healthcare is a structural problem that the care team cannot fully solve, but it can mitigate. A registered nurse who coordinates with the treating physician and specialist team, who ensures that a UTI identified at home reaches the urologist, that a skin change reaches the physician before it requires hospitalization, that a new medication prescribed by one specialist is reviewed in the context of the full medication list — that coordination function is one of the most clinically valuable things in-home skilled nursing provides for adults with Spina Bifida.
In a rural area like Sauk County, where access to specialists requires travel and where local providers may have limited Spina Bifida experience, the in-home nursing team's role as care coordinator and communication bridge is even more significant. We are often the clinical member of the team with the most frequent contact with the person and the most current knowledge of their status. That position carries an obligation to use it well.
Center the person's own expertise and goals. Adults with Spina Bifida who have managed their condition for decades have developed expertise about their own bodies that no clinician can replicate from the outside. The care team that treats this expertise as relevant — that asks what has worked, what has not, what the person wants their life to look like, what independence means to them and which aspects of it they are most determined to preserve — builds plans that the person will actually follow.
The care team that imposes a generic management approach without engaging the person's own knowledge tends to produce plans that are theoretically correct and practically unsuccessful. And in a condition where the consequences of non-adherence include kidney damage, serious pressure injuries, and functional decline, unsuccessful plans have real clinical consequences.
Aging with Spina Bifida is not just a medical management problem. It is a life management problem, and the person living that life is the primary expert on it.
The urologist. Kidney protection is the primary long-term health priority for most adults with myelomeningocele. The urologist who monitors bladder pressures through regular urodynamics, assesses for vesicoureteral reflux, manages the bladder management program, and catches the early signs of renal compromise is protecting something that cannot be recovered once it is significantly lost. As adults with Spina Bifida age, urological complexity tends to increase — the bladder management program that worked well at thirty may need adjustment at fifty — and the urologist's role in the care team becomes more rather than less important. Annual urological follow-up at minimum, with imaging and urodynamics on a schedule the urologist specifies, should be a non-negotiable component of adult care.
The physiatrist. The physiatrist — the rehabilitation medicine specialist — is the care team member most positioned to address the functional and mobility changes that accumulate with age in Spina Bifida. Upper extremity pain and decline, wheelchair fit and configuration, orthotic assessment, spasticity management, and the overall functional picture across the musculoskeletal system are all within the physiatrist's scope. This is the specialist most likely to identify upper extremity deterioration early and refer for physical or occupational therapy before the decline becomes irreversible, and the one most likely to evaluate whether a power wheelchair would reduce the shoulder damage that manual wheelchair propulsion is producing. In a rural area where physiatry may require travel, telehealth consultation for some follow-up visits has become increasingly viable and is worth exploring.
The primary care physician. The primary care physician who truly understands Spina Bifida — who does not treat the person's complex medical picture as unfamiliar territory to be navigated around, who communicates with the specialists, who manages the general health picture with awareness of the Spina Bifida context — is one of the most valuable and hardest to find members of the adult care team. A primary care physician who is willing to learn from the patient and to consult with specialists when the Spina Bifida-specific dimensions of a problem exceed their experience is a reasonable second best, and one that many adults with Spina Bifida in smaller communities work with effectively.
The mental health provider. Depression and anxiety are significantly more prevalent in adults with Spina Bifida than in the general population, and they are consistently undertreated. The mental health provider who understands chronic illness and disability — who does not pathologize the legitimate concerns and adaptive responses that are actually reasonable given the person's situation — is a meaningful contributor to the overall health picture. Mental health affects condition management, treatment adherence, social participation, and quality of life in ways that are not separate from the physical health picture. The care team that does not include mental health support is missing something important.
The in-home skilled nurse and caregiver. The in-home care team — the registered nurse who oversees care and the caregiver who is present in the home regularly — is often the most frequently present professional member of the care team. They see what the specialist appointments do not: how the person is actually functioning between visits, whether the management routines are being followed, what the skin looks like on a Tuesday morning, how the person's energy and mood have changed over the past few weeks. That information is clinically valuable, and a skilled nursing team that uses it — that documents baselines, monitors for change, and communicates promptly with the treating team when something shifts — is providing care coordination that the specialist network alone cannot replicate.
BrightStar Care of Baraboo provides skilled nursing and non-medical caregiving for adults with Spina Bifida and their families throughout Baraboo, Reedsburg, Portage, Wisconsin Dells, Sauk City, Prairie du Sac, and surrounding Sauk and Columbia County communities.
We understand that in a smaller community like ours, the in-home care team plays a more central coordination role than it might in a larger urban area with dense specialist access. Our registered nurses establish clinical baselines, monitor for the secondary complications that aging with Spina Bifida produces, provide skilled clinical services including catheterization support, skin assessment and wound care, medication management, and bowel program oversight, and communicate actively with the treating physician and specialist team.
Our caregivers provide the consistent daily personal care support that makes independent living sustainable — transfers, mobility assistance, personal hygiene, bowel program assistance, skin inspection, meal preparation, and household support. We match caregivers to clients carefully and work to maintain continuity in the caregiving relationship, because the knowledge that consistency builds is not replaceable.
We also understand that adults with Spina Bifida in our community have been managing their condition and advocating for themselves for a long time. Our role is to support what they have built, not to impose a care structure that ignores their expertise. Every care plan we develop starts with listening to the person at the center of it.
BrightStar Care of Baraboo provides skilled nursing and non-medical home care services for adults with Spina Bifida and their families throughout Baraboo, Reedsburg, Portage, Wisconsin Dells, Sauk City, Prairie du Sac, and surrounding Sauk and Columbia County communities. To speak with a care coordinator about building the right support team for your loved one this October, contact our office today.
Contact Us Today:
For most of childhood, the care team is assembled around the child. Pediatric specialists, school-based therapists, coordinated clinic visits, and involved parents form a structured, well-organized support system that, while imperfect, is deliberately built for the purpose. Then adulthood arrives. The pediatric team transitions the patient out. The school services end. The coordinated clinic model gives way to a fragmented adult healthcare system. And the informal care network — the parents who have provided daily support for two decades — begins, slowly and then more rapidly, to age alongside the person they have been supporting.
What adults with Spina Bifida need from their care team changes significantly as they age. Understanding those changes, and building a care team that can respond to them, is one of the most important things a family can do for a loved one with this condition. This post is a practical guide to doing exactly that.
Call 608-355-5015 Visit Our Website
What "Care Team" Actually Means for an Adult With Spina Bifida
For a child with Spina Bifida, the care team is often centered in a multidisciplinary clinic where specialists communicate with each other and with the family in a coordinated way. For an adult, the care team is almost always more fragmented, more self-directed, and more dependent on the individual and their family to hold together.A comprehensive adult care team for someone with myelomeningocele typically includes a urologist with neurogenic bladder experience, a neurosurgeon for shunt monitoring, a physiatrist or rehabilitation medicine specialist, an orthopedist, a primary care physician who understands the complexity of Spina Bifida, and — for many adults — a mental health provider. In a smaller community like Baraboo and the surrounding Sauk County area, some of these specialists may require travel to Madison or another regional center, which creates its own logistical and financial burden.
In-home care — both skilled nursing and personal caregiving — is not a peripheral member of this team. For adults with Spina Bifida who receive in-home support, the nurse and caregiver who are present in the home regularly are often the members of the care team who have the most current and most accurate picture of how the person is actually functioning day to day. That position carries real responsibility and real value.
What the Care Team Needs to Do Differently as the Person Ages
Move from reactive to proactive monitoring. The pediatric care model tends to be organized around acute events — a shunt revision, a tethered cord release, a pressure injury that required hospitalization. Adult care for Spina Bifida needs to shift toward proactive monitoring that catches the secondary complications of aging before they produce acute events.Upper extremity deterioration from decades of wheelchair use does not announce itself with a dramatic injury. It accumulates — shoulder pain that is manageable, then persistent, then limiting, then debilitating. Kidney function changes from neurogenic bladder that is slightly less well managed than it was at thirty does not produce symptoms until significant damage has occurred. Pressure injury risk that was adequately managed with the habits of youth becomes higher risk as skin elasticity decreases and tissue tolerance changes with age.
A care team that is monitoring proactively — scheduling the urodynamics, assessing upper extremity function at regular intervals, examining skin at every visit, asking the questions that identify gradual change before it becomes crisis — is providing fundamentally different and more valuable care than one that responds to problems after they have become serious.
For in-home care, proactive monitoring means that the registered nurse who oversees care is establishing and documenting baselines, reviewing those baselines at regular intervals, and communicating changes to the treating physician before they reach the threshold of crisis. It means caregivers who know what this person's skin, bowel function, energy level, and mood look like on a normal day, so that departures from that normal are recognized and reported.
Develop expertise in the specific secondary conditions of aging with Spina Bifida. The secondary conditions that accumulate in adults with Spina Bifida are not the same as the secondary conditions of general aging, and a care team that treats them as interchangeable provides inadequate care.
Upper extremity overuse injury in a lifelong wheelchair user is different from rotator cuff injury in a sixty-year-old who has never used a wheelchair. Neurogenic bladder in a fifty-year-old with myelomeningocele is different from age-related bladder changes in the same person's age peers. Pressure injury risk in someone with lifelong impaired sensation is different from pressure injury risk in a person who recently lost mobility due to illness or injury.
The care team needs to include members who understand these distinctions — who know the Spina Bifida literature, who have experience with this population, who do not treat the person's lifelong expertise about their own condition as irrelevant. Finding those providers in a smaller community like Baraboo sometimes requires connecting with specialists in Madison or the broader region, and the in-home nursing team can be an important bridge — helping the family navigate the specialist landscape, communicating between providers, and ensuring that the coordination that the pediatric clinic model used to provide is maintained in some functional form in adulthood.
Communicate across the care team consistently. The fragmentation of adult healthcare is a structural problem that the care team cannot fully solve, but it can mitigate. A registered nurse who coordinates with the treating physician and specialist team, who ensures that a UTI identified at home reaches the urologist, that a skin change reaches the physician before it requires hospitalization, that a new medication prescribed by one specialist is reviewed in the context of the full medication list — that coordination function is one of the most clinically valuable things in-home skilled nursing provides for adults with Spina Bifida.
In a rural area like Sauk County, where access to specialists requires travel and where local providers may have limited Spina Bifida experience, the in-home nursing team's role as care coordinator and communication bridge is even more significant. We are often the clinical member of the team with the most frequent contact with the person and the most current knowledge of their status. That position carries an obligation to use it well.
Center the person's own expertise and goals. Adults with Spina Bifida who have managed their condition for decades have developed expertise about their own bodies that no clinician can replicate from the outside. The care team that treats this expertise as relevant — that asks what has worked, what has not, what the person wants their life to look like, what independence means to them and which aspects of it they are most determined to preserve — builds plans that the person will actually follow.
The care team that imposes a generic management approach without engaging the person's own knowledge tends to produce plans that are theoretically correct and practically unsuccessful. And in a condition where the consequences of non-adherence include kidney damage, serious pressure injuries, and functional decline, unsuccessful plans have real clinical consequences.
Aging with Spina Bifida is not just a medical management problem. It is a life management problem, and the person living that life is the primary expert on it.
Call 608-355-5015 Visit Our Website
The Specific Care Team Members Who Matter Most as Spina Bifida Adults Age
The urologist. Kidney protection is the primary long-term health priority for most adults with myelomeningocele. The urologist who monitors bladder pressures through regular urodynamics, assesses for vesicoureteral reflux, manages the bladder management program, and catches the early signs of renal compromise is protecting something that cannot be recovered once it is significantly lost. As adults with Spina Bifida age, urological complexity tends to increase — the bladder management program that worked well at thirty may need adjustment at fifty — and the urologist's role in the care team becomes more rather than less important. Annual urological follow-up at minimum, with imaging and urodynamics on a schedule the urologist specifies, should be a non-negotiable component of adult care.The physiatrist. The physiatrist — the rehabilitation medicine specialist — is the care team member most positioned to address the functional and mobility changes that accumulate with age in Spina Bifida. Upper extremity pain and decline, wheelchair fit and configuration, orthotic assessment, spasticity management, and the overall functional picture across the musculoskeletal system are all within the physiatrist's scope. This is the specialist most likely to identify upper extremity deterioration early and refer for physical or occupational therapy before the decline becomes irreversible, and the one most likely to evaluate whether a power wheelchair would reduce the shoulder damage that manual wheelchair propulsion is producing. In a rural area where physiatry may require travel, telehealth consultation for some follow-up visits has become increasingly viable and is worth exploring.
The primary care physician. The primary care physician who truly understands Spina Bifida — who does not treat the person's complex medical picture as unfamiliar territory to be navigated around, who communicates with the specialists, who manages the general health picture with awareness of the Spina Bifida context — is one of the most valuable and hardest to find members of the adult care team. A primary care physician who is willing to learn from the patient and to consult with specialists when the Spina Bifida-specific dimensions of a problem exceed their experience is a reasonable second best, and one that many adults with Spina Bifida in smaller communities work with effectively.
The mental health provider. Depression and anxiety are significantly more prevalent in adults with Spina Bifida than in the general population, and they are consistently undertreated. The mental health provider who understands chronic illness and disability — who does not pathologize the legitimate concerns and adaptive responses that are actually reasonable given the person's situation — is a meaningful contributor to the overall health picture. Mental health affects condition management, treatment adherence, social participation, and quality of life in ways that are not separate from the physical health picture. The care team that does not include mental health support is missing something important.
The in-home skilled nurse and caregiver. The in-home care team — the registered nurse who oversees care and the caregiver who is present in the home regularly — is often the most frequently present professional member of the care team. They see what the specialist appointments do not: how the person is actually functioning between visits, whether the management routines are being followed, what the skin looks like on a Tuesday morning, how the person's energy and mood have changed over the past few weeks. That information is clinically valuable, and a skilled nursing team that uses it — that documents baselines, monitors for change, and communicates promptly with the treating team when something shifts — is providing care coordination that the specialist network alone cannot replicate.
How BrightStar Care of Baraboo Fits Into the Care Team
BrightStar Care of Baraboo provides skilled nursing and non-medical caregiving for adults with Spina Bifida and their families throughout Baraboo, Reedsburg, Portage, Wisconsin Dells, Sauk City, Prairie du Sac, and surrounding Sauk and Columbia County communities.We understand that in a smaller community like ours, the in-home care team plays a more central coordination role than it might in a larger urban area with dense specialist access. Our registered nurses establish clinical baselines, monitor for the secondary complications that aging with Spina Bifida produces, provide skilled clinical services including catheterization support, skin assessment and wound care, medication management, and bowel program oversight, and communicate actively with the treating physician and specialist team.
Our caregivers provide the consistent daily personal care support that makes independent living sustainable — transfers, mobility assistance, personal hygiene, bowel program assistance, skin inspection, meal preparation, and household support. We match caregivers to clients carefully and work to maintain continuity in the caregiving relationship, because the knowledge that consistency builds is not replaceable.
We also understand that adults with Spina Bifida in our community have been managing their condition and advocating for themselves for a long time. Our role is to support what they have built, not to impose a care structure that ignores their expertise. Every care plan we develop starts with listening to the person at the center of it.
Call 608-355-5015 Visit Our Website
Frequently Asked Questions
Q: My loved one with Spina Bifida sees multiple specialists in Madison. How does in-home care in Baraboo fit into that picture?
In-home care is the part of the care team that is present between the specialist appointments, and in many ways it is the most important part. A urologist who sees the person once a year is making clinical decisions based on a snapshot. A nurse who visits regularly is monitoring the actual trajectory. When we notice a change — a shift in bladder function, a new skin concern, an energy change that might suggest a developing UTI — we communicate with the treating specialist promptly rather than waiting for the next scheduled appointment. For families navigating the distance between Baraboo and Madison for specialist care, having a skilled nursing team in the home that can extend the specialist's clinical reach into daily life is particularly valuable. We can also assist with appointment preparation — documenting current status, changes since the last visit, and questions the family wants to raise — so that the time with the specialist is used as effectively as possible.Q: My parent has been the primary caregiver for our adult sibling with Spina Bifida for decades. How do we transition to professional support as my parent ages?
This is one of the most common and most sensitive transitions in adult Spina Bifida care, and it deserves to be planned well before it becomes urgent. The best time to begin introducing professional caregiving support is while the parent caregiver is still capable of being present during visits — so they can orient the new caregiver to the specific routines, preferences, and needs they have developed over years. Starting with a few hours of support per week for tasks that are becoming physically demanding for the parent, rather than beginning with intimate personal care, allows a relationship to develop between the person with Spina Bifida and the new caregiver gradually. When the transition of primary caregiving responsibility eventually occurs, it is to a familiar person with established knowledge rather than a stranger arriving in a crisis. We are glad to work with families who are in the early stages of this planning, well before the transition becomes urgent.Q: How does BrightStar Care of Baraboo handle communication with specialists who are based in Madison or other regional centers?
Our registered nurses document clinical status, observations, and changes at every visit and communicate directly with the treating physician and specialist team when a concern warrants it. We do not wait for the next scheduled appointment to flag a developing concern. For clients whose specialist team is based in Madison, we are experienced in working within that care structure — understanding which changes warrant a call to which provider, how to communicate clinical observations in a way that is useful to specialists, and how to implement new orders or care plan changes that come from specialist visits promptly and correctly. We also maintain records that the family can bring to specialist appointments to give the clinical team an accurate picture of how their patient has been functioning between visits.BrightStar Care of Baraboo provides skilled nursing and non-medical home care services for adults with Spina Bifida and their families throughout Baraboo, Reedsburg, Portage, Wisconsin Dells, Sauk City, Prairie du Sac, and surrounding Sauk and Columbia County communities. To speak with a care coordinator about building the right support team for your loved one this October, contact our office today.
Contact Us Today:
- Phone: 608-355-5015
- Address: 502 Oak St. Offices 6 & 7, Baraboo, WI 53913
- Visit Us Online: BrightStar Care of Baraboo