Case management from home was originally brought to life from the daily observations in my clinic seeing families struggling to support a child with complex needs as they meandered their way through the educational and medical models. Families were required to attend multiple assessments and consultations to discover the accurate diagnosis from a number of medical specialists and therapists such as Speech Pathologists, Occupational Therapists, Psychologists and Physiotherapists that would form what is now called a consortium. Following this arduous process of accessing support for a child by providing a diagnosis, this would then lead to referrals to service providers. Then there was applications for funding to then be able to provide provisions for professional services which could also result in longer waits on waiting list to be assessed for eligibility based on the severity of their condition.Once this was ascertained, then it was about whether that family who worked to support the child would then even be able to access that professional due to human resources issues, especially in the field of Speech Pathology.
It is well understood that many parents are frustrated from the process involved in supporting a child with complex needs when all they want is to get on with the therapy, lessons or training. The frustration is that all this time, money, report expenses could have been invested directly into the actual help.
Case management from home aims to support parents directly in fast tracking and streamlining this process so then they can get down to supporting their child in the therapy that they need.
Case management from home when supporting a child with complex needs aims to…
So who can benefit from case management from home?
Individuals who benefit from case management from home are the families and children with high or complex needs who may be in need of long term or life long care in regards to their educational and medical needs. As I have now clocked up two decades of clinical practice as a Speech Pathologist, I often come across teenage and often adult clients who have been supported for their entire lives and have a long list of specialists, therapists and learning programs for specialised teachers for many years. It is not uncommon for a family member who is supporting a child or an individual to bring in a huge folder full of information collected and there be an expectation for me to have it read in preparation for an assessment. This would feel like looking for a needle in a hay stack to determine what was current, relevant and useful to set up to date goals. I came to understand that there must be a better way to support a child than by staying back to the late hours and burning out as their speech pathologist.
There needed to be a method of helping families with case management from home to do it themselves as they were the key people in the centre of the child that needed support. Despite my interest, my capability and desire to support the child in their case management, I was still rendered disempowered as I did not have access to all the information regarding the child and their education,medical history and programs as I was a spoke on the wheel where the parent was in the centre that all the information moved towards. So, for me, it then became about teaching parents, step-by-step, case management from home, to support their child and coordinate the flow of information and prepare for meetings. However, this was taking from my ability to provide treatment to the child (being my primary role) and given the restrictions already in availability of Speech Pathologists to provide critical services, something had to give!!
Many nights pulling my hair out and going home exhausted, led to the birthing of this brain child between Kerry, my partner, and I. If we could develop a step by step, lesson by lesson support program that gave critical and useful information to the parents supporting the child, then this would overflow not only to their professional team but most importantly to the child. So that is where it started. If I could hook this up to an autoresponder, then I would not have to keep repeating myself with each family who was supporting a child as they could take over that role of case management from home. There was so much information to give and so little finances in families pockets that this critical information needed to be provided at little to no expense, readily and accessible and mandatory to support a child effectively.
Why go to all this trouble to develop a case management from home program to support parents to support a child?
To effectively support a child with high needs to the level that they require and with the resources that they need to do this, I understood that we had so far to go …so much to do… with so little resources to do it with. This frustration is felt daily by both families supporting a child and medical professionals, therapists and teachers. I saw this clearly from the perspective of a Speech Pathologist whereby our children requiring support were in need of regular sessions of treatment (ie. weekly or fortnightly consultations) over long durations of time (ie. terms to years to life long). There is no wonder there are often extreme waiting lists to see Speech Pathologists, being only one professional in the team necessary to support a child with high needs. Even if funding could be found, human resource availability of actually finding a Speech Pathologist to undertake the long term commitment and offer the appointments then became an even more challenging problem for families that were supporting the child. Without inside knowledge of the system, the professionals in their local area and the expertise of those professional, the families supporting a child felt powerless to make decisions necessary to effectively case manage from home, even if they took on the challenge to do themselves like I saw so many capable families do. At this point I realised that they needed the information in their hands to be able to make effective decisions, but this too, was costing them to get advice and information to do this.
It seemed that everywhere these families who were working to support a child with complex needs turned they had obstacles, frustrations, expenses, disappointments and struggled to string the services together in a coordinated way to maximise the benefits and communications between the parties.
If we were to achieve our goals in supporting a child to their potential then it would take being absolutely creative and accessing every single resource that we had available to us. Our time, our money, our creativity, our expertise and our resources at hand that may be cheap, reproducible and of course free;.
So case management form home became our CENTRAL STATION…
A central station where parents could visit to gain information that they required when needed. But case management from home had to also be the train tracks of different topics that led step by step in a direction to somewhere that was useful for the specific needs of that population of children requiring support. The requirements to support a child varied considerably depending on that disability population and what their needs were to be supported. Some examples of children and their needs that can benefit from the case management from home program and a generalised list of service providers that would be involved in their team are included below. This list is not meant to be conclusive as each individual varies depending on their needs, but it does draw the point of how many individuals are sharing similar information about the child…or aren’t. Hence the reason for the case management from home model.
|Diagnosis||Possible Associated conditions||Team members involved|
|Down Syndrome||Cognitive impairment, speech and language impairment, hearing impairment, learning disability, heart complaints, low muscle tone||Paediatrician, Geneticist, General Practitioner, Ear Nose and Throat Surgeon, Cardiac Specialist, Speech Pathologist, Occupational Therapist, Physiotherapist, Audiologist, Guidance Officer, Learning Support Teacher, Classroom Teacher, Teachers Aid.|
|Autistic Spectrum Disorder (ASD)||Pragmatic communication disorder, communication and language impairment, learning impairment, behavioural challenges||Paediatrician, General Practitioner, Speech Pathologist, Audiologist, Psychologist, Occupational Therapist, Audiologist, ABA therapist, Guidance officer, Learning Support Teacher, Classroom Teacher, Teachers Aid, technology suppliers.|
|Speech and Language Impairment||Learning disability; dyslexia and dysgraphia, dyscalculus||Paediatrician, General Practitioner, Ear Nose and Throat Surgeon, Speech Pathologist, Audiologist, Occupational Therapist, Physiotherapist, Guidance Officer, Learning Support Teacher, Classroom Teacher, Teachers Aid.|
|Learning Disability||dyscalculus (maths), emotional challenges|
|Attention Deficit Hyperactivity Disorder (ADD & ADHD)||Inattention,cognitive challenges, behavioural challenges, dyslexia and dysgraphia||Paediatrician, Paediatric Psychiatrist, General practitioner, Psychologist, Speech Pathologist, Audiologist, Occupational Therapist, Behavioural Optometrist, Class Teacher, Learning Support Teacher, Tutor, Pharmacist, Nutritionist or Dietitian.|
|Prada Willi Syndrome||Pragmatic disorder, speech and language disorder, cognitive impairments, low muscle tone, sensori-motor impairments, learning disability-dyslexia and dysgraphia, eating disturbances||Paediatrician, General Practitioner, Geneticist, Psychologist, Speech Pathologist, Occupational Therapist, Audiologist, Special needs Teacher and Class Teacher, Guidance officer, Dietitian.|
|Sensori-motor processing disorder||Inattention, speech impairment, central auditory processing impairments, low muscle tone, sensory seeking behaviour.||Paediatrician, General Practitioner, Speech Pathologist, Occupational Therapist, Behavioural Optometrist, Learning support Teacher, Class teacher.|
|Cerebral Palsy||Physical impairments, speech and language impairment, cognitive impairment, feeding impairments, learning disability||Neurologist, General Practitioner, Radiologist, Surgeon, Clinical nurse, Speech Pathologist, Occupational Therapist, Physiotherapist, Chiropractor, Osteopath, Special Needs Unit and Teachers, Learning support team, Teachers Aids, technology suppliers.|
|Oppositional defiance disorder and conduct disorder||Learning disability, hyeractivity and inattention, mood disorder, pragmatic disorder||Paediatrician, Paediatric Psychiatrist, Psychologist, Speech Pathologist, Social Worker, Learning support teacher, Guidance officer, deputy/Principal, class teacher|
|Childhood Diabetes||General Practitioner, Clinical nurse|
Note: there also may be other associated support people such as Chiropractor, Osteopath, Dietitian, Music Therapist, Nutritionist and the list goes on.
Children receiving support may also attend school activities or extra curricular events where these individuals need to be supported based on their needs and these service providers also need to learn and understand best how to achieve this. This may include; speech and drama teachers, karate instructors, swimming teachers, dance teachers, music teachers, horse riding instructors to also just name a sample for us to start thinking about the diverse range of people that make up the community that support children with complex needs.
When we look at it this way, one thing I have always considered is that it is a privilege that all these team members take the effort to learn, invest time and energy to support the needs of children with complex needs. When I get overwhelmed with the day job, I sometimes like to sit back and compare the extra attention and support that is given to children who sadly slip through the system and are in the mild group and do miss out on a great deal of support for them to achieve their needs. At this point I usually open up the discussion of privilege verse entitlement and this seems to help all involved gain a better sense of balance and understand that we are all on the same team striving to achieve the same goals…to support the child.
So what is in the design of case management from home? As a parent supporting a child-what should I expect?
Case management from home had to be planned and structured and rolled out to parents supporting the children in steady steps so as not to overwhelm the families who were supporting a child. They didn’t need to feel the feelings that many therapist were feeling when those HUGE folders were being dropped on their desk to read over night for a complex client with a huge medical team and educational team and somehow devise a program in a one hour time slot!! Yes there is value in professionals…but under all this-we were still only human-and it was a normal feeling for many professionals to feel over whelmed with the needs that some disabilities required to make plausible or even satisfactory functional change-let alone to strive to reach that child that is being supported to gain their optimal capability.
The program needed to be practical, user friendly, instantly appliable but also flexible in gaining the knowledge when you needed it rather than having to wait. It needed to be a collection of facts, details and knowledge across multiple disciplines in medical and educational circles to enable parents to make informed decisions.
What case management from home never set out to do?
Case management from home was never designed or developed to be a replacement for specialised services within both the medical/ health sector and educational model. To do so would be short sheeting the degree and level of expertise that is required to make medical diagnosis, therapeutic programs and educational plannings from many years of development and expertise. Children and there reasons to be supported are so diverse and medical health plans and support programs need to be developed around the child being supported. This is why they are called Individual Educational Plans (IEP). What our program and the case management from home model aims to do is to provide you with information to assist in your decision making, in planning for services and resources and in coordinating and communicating information among the team with a primary reason to support the child to the best capacity to achieve the goals set by you and your service team provider,
Will I need to be active and have to learn information that I may not know already?
This is a certainty. If you already support a child with complex needs you already know that there isn’t a choice. It is either you, your family or they just don’t get access to the support. Learning and knowledge are the seeds of empowerment to achieving what you need based on clear-realistic-goals set from collaboration with experts who can best advise you on what this is to support your child.
This program aims to be developed directly dependent on the needs of the community it supports. That is the families and the children being support with complex needs. Kerry, my team and I are very interested in your comments, suggestions and information that can assist us to add and develop this service for families in need. Please leave comments or email us as it is the communication that counts.
13 years ago I dreamed of a support system to assist kids with communication impairments…I even spoke in front of my professional association one evening, however, we did not have this IT medium in place in 2000 to enable these goals to be achieved.
My motto was to be …
put the money where the mouth is
and give little stars a chance to shine.
Dreams become reality if you are prepared to put in effort and time.
Kerry and I have made a start and we are welcoming others, as we know there are many professionals and families who are serious about making changes to support kids and not waiting around for government funding to make a difference. Enter your details to enlist on the FREE support program and inside there will be many creative and ingenious methods to achieving these goals to support these little stars. Just enlist, even if you are a health provider and you are interested. You may just be the person who can assist someone getting to the support that they need to learn how to best support their child using the case management from home model.
Speech Pathologist/ rehabilitation consultant (communication)/ voice consultant
Director of Optimal Communications & Optimal Phonics