CHRONIC MEDICAL CONDITIONS
A Multidisciplinary
Team Approach
To Provide Continuous and Supportive
Care
We are the Team
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The CONSUMER
Family
Direct care staff
Supports
Health care pros
Therapists
Oversight people
The consumer is always the
center of focus
CONSUMER
Who might be included in the
circle of supports
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Inner Circle
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Outer Circle
Who Is This Training for?
You
 Introduce yourself
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How do you support the
consumer
Health Care Coordination
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Ensuring the health and safety of the
individual you work with
The consumer and everyone supporting
this consumer is involved
Let us take a cue from Core training
Five Responsibilities of the
Support Professional
1.
Observe Use your senses – sight,
hearing, smelling – to detect when
changes are taking place with a person.
Five Responsibilities of the
Support Professional
2.
Document: Documenting what
you’ve observed provides a snapshot
for how a person is doing at a certain
point in time. You’ll need to include
both behavioral and physical
observations in your documentation.
Five Responsibilities of the
Support Professional
3.
Report: Besides documenting what you’ve
observed, you’ll often have to tell others – such as
your supervisor, the individual’s legal representative,
and medical personnel – about a person you’re
caring for. Be ready to discuss:
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Changes in a person over time
How long the changes have been happening
How often they change
Any new activities or changes in the person’s diet, or anything else
that might provide clues as to why the person is different.
Five Responsibilities of the
Support Professional
4.
Take Action: After you’ve reported a
person’s situation to someone else,
YOU must make sure people you care
for receive the medical attention they
need. You’ll need to learn the
difference between life-threatening
and non-life-threatening situations so
that you’ll know what to do in each
case.
Five Responsibilities of the
Support Professional
5.
Follow Up: You must follow up on the
people who are receiving medical care to
make sure they return to an optimal state
of health. Tasks may include making sure
the person completes prescribed rounds of
medications, documenting changes in the
person’s health, and pushing for adequate
health care when the person does not show
a positive response to the current treatment
plan.
Deciding What Records to
Keep
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Document what you observe
Forms used match the issues observed
Bowel charts, Urine charts, menstrual
cycle charts, weight charts
Blood Pressure records, accu check
diaries….
MARs
Records
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Appointment logs
Lab reports, x-ray and other test results
Support plans
Behavioral
Incident reports
Name some more
Keep records of past medications
Records
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Keep a record of different doctors the
consumer has seen and for what reason
Keep a record of past medical issues
Medications that have been tried and
did not work
Therapies
Health Information
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Keep information current
File properly, see chart of forms used
that states location
Skin charts,etc….
Now that the charts and forms are used
Who should you share them with
On Going and Life Long Needs
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Most consumers have ongoing needs
for multiple services
These needs are not stable
Many factors result in changes in the
mix and intensity of needs
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Underlying conditions
Normal development
Aging
Therapy
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Therapies are most effective when
started early
Developmental processes, especially
during the first 5 years of life, build on
each other and form the foundation for
future development
Continuing
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Technology changes
Life circumstance changes
Relationship to family
New assistive devices
Care Planning
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Assessing needs
Develop a treatment plan to meet those
needs
Specify who will provide each plan element
Arrange for these services
Follow-up to ensure that services were in fact
delivered and are they having the desired
effect
Care Planning (cont)
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Periodic re-assessment of needs and
adjusting treatment plans accordingly
Aging processes bring about health
changes
Our Part in this
Ongoing
 Each of us according to our
level of training and services we
provide
 Keep up with the information
flow
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Assessment (Continued)
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All providers have the training
necessary to meet needs
Keep all health and functioning
information current
Medication oversight in place
Knowing a Consumer’s
Baseline
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Health care for a consumer requires
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Knowing a consumer as an individual
Knowing the “normal” for this consumer
Knowing the medical complexity of this
individual (present and past health issues)
Acquiring,if needed, the skill to meet this
consumer’s needs
Developmental Disabilities
1.
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4.
5.
Mental Retardation
Autism
Cerebral Palsy
Spina Bifida
Prader-Willi Syndrome
A Limited Overview
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Focusing
Focusing
Focusing
Focusing
Focusing
Focusing
on Primary Health Issues
of Co-Health Issues
on associated risk factors
on care needed
on records needed
on the flow of information
Mental Retardation
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Cognitive functioning measured at 69 or
less with onset before age 18
Life and health issues:
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Communication, social/interpersonal skills
Self care, self direction, functional
academic skills
Health and safety
Common Associations
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Maladaptive behavior and/or psychiatric
disorders
Cerebral Palsy
Seizure disorders
Autism or autistic – like qualities
MR Associations continued
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Vision impairments
Hearing impairments
Attention deficit hyperactivity disorder
Monitor MR Risk Factors
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Evaluate yearly--vision and hearing
Mental and Behavioral issues
Minimize significant changes in
caregivers and environment
Regression and/ advances of skills
learned
Oral and dental self care
Monitoring continued
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Personal Hygiene
Speech and language progress
Socialization Issues
Medication needs
DOWN SYNDROME
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Mental Retardation
Low muscle tone
Small mouth
Small ears, 75% with hearing loss
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50-70% have chronic or frequent infections
Vision Impairments in 60%
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Frequent eye infections
Down Syndrome (cont.)
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Congenital heart disease (50%)
Thyroid disease (15%)
Cervical spine abnormality (10%)
Seizures (5-10%)
Obesity
Psych and behavioral Problems
Dementia in older years
Autism Spectrum Disorder
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A milder form– Asperger Syndrome
Symptoms vary from person to person
Involves communication skills
Social interactions are affected
Involves Repetitive motions
Autism Associated Issues
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Sensory Impairment
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Painfully oversensitive to certain sounds,
textures, tastes and smells
May have impaired sensitivity to hot, cold,
or pain
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“ a light touch could make them cry out and yet
may not feel a broken arm”
Autism Continued
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Cognitive Delay
Some areas of ability may be normal
while others very weak
 Varying degrees
 Higher functioning –Asperger
Syndrome
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Autism Continued
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Seizures
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Often begin in early childhood or
adolescence (generally get worse as they grow
older)
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Fragile X affects 2-5%
Tuberous Sclerosis in 1-4% (genetic-
causes tumors to grow in the brain and other
vital organs)
Autism Continued
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May also have hyperactivity disorders
May have Attention Problems
Do not like “changes”
The earlier the intervention the better
the response
Many are able to live very productive
lives
Autism - Risks
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Self injurious behavior
Compulsive behavior
May not feel cold
May not feel pain
Various behavioral issues
Seizures
Autism continued
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Diet as therapy???
Speech Therapy
Behavior Therapy
Psych medications
Seizure medications
Safety needs
Spina Bifida
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Compromised spinal cord to various
degrees
Myomeningocele creates severe
damage to the nerve pathways
Severe damage is what we will discuss
Mylomeningocele
Spina Bifida
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Spinal deformities
Paralysis, decreased sensation or muscle
weakness below spinal opening
Bowel dysfunction
Bladder dysfunction
Hydrocephalus
Swallowing Problems
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Possible learning problems
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Health Risks and Issues
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Skin Breakdown
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Immobility
Lack of sensation
Use of orthotics
Bladder problems
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Urinary track infections
Bladder may not empty becoming over filled
May lead to Kidney failure and blood pressure issues
Health Risks continued
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Dysphagia-difficulty swallowing
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Most often seen in childhood
Sudden or slow to develop
Immediate intervention is necessary
Health Risks continued
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Bowel incontinence from impaired nerve
function
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Diarrhea
Constipation
Obesity- due to low levels of physical
activity
Health Risks continued
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Respiratory
Restrictive lung disease due to
progressive scoliosis (preventable?)
Latex Allergy
Lack of weight bearing on bones
Unbalanced weight management
Health needs
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Monitor skin
Positioning needs
Adaptive supports fit and used correctly
Monitor nerve functioning
Bowel and Bladder
Diet, weight, blood pressure
Psych needs
Management
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Keep up with the flow of health issues
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Keep medical records current
Be Proactive
Pay attention to details—Observation
Timely intervention
Cerebral Palsy
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Spastic Issues in 50%
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Mostly lower extremities
May involve one arm and leg same side
Athetoid-weak floppy muscles in 20%
Ataxic- weak floppy muscles in 10%
Cerebral Palsy
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A central nervous system disorder
Non progressive
Goals: promote optimal function,
maintain health, gain new skills and to
anticipate-prevent-and treat
complications
There may be other associated deficits
Health Issues- Spastic
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Greater if all limbs plus neck and trunk are
affected (quadraplegic)
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Hemiplegic-mostly lower extremities
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May have severe cognitive delay
Seizures
Average cognition, may have seizures
Hemiplegic-one arm/leg same side
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Average cognition, may have seizures
Spastic Issues
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Muscle stiffness, jerks or spasms
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Unusual pulls and strains on joints
Contractures, Scoliosis, limb shortening
Skin breakdown
May compromise function of lungs
Seizures
Eating difficulties - Poor Nutrition
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GERD
Ulcers, stomach emptying issues
Excessive drooling, Aspiration
Spastic Issues
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Eye issues in 3 out of 5 (one eye pulls out)
Dental Issues
Hearing issues in 30-40%, Speech issues
Bowel and bladder issues
If one side of the body is affected may not be
aware of (sense) the position of the affected
side
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Must look to see how a hand is pointing
May act as though it is not there even if motor
disability is mild
Low muscle tone issues
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Affects balance, depth perception, and gait
Associated with abnormal, uncoordinated and
uncontrollable movements
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May develop Spasticity in late childhood
Speech affected
Hearing may be affected
Cognitive delay varies from low to severe
Skin breakdown
CP –Low Tone Issues
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Bowel and Bladder issues
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Chronic urinary track infections
Oral motor involvement
Constipation- diet, meds
Respiratory issues
Osteoporosis
Team
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Physical Therapy
Speech Therapy
Occupational Therapy
Dietary/Nutrition therapy
Neurologist, Gastroenterologist, PCP,
May need Urologist……Psych
Needs your support
Prader-Willi Syndrome
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Poor body temperature control
Obesity
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Impulsive and other behavior issues
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> BP, > Cholesterol, HD and stroke
Skin Picking
Cognitive delay, speech delay
Prader-Willi cont.
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Scoliosis
Diabetes
Pulmonary hyper or hypo tension
Sleep apnea
Osteoporosis
ADD
Premature death
Seizures
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Safety Issues
Multiple medications
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Multiple side effects
Vagal Nerve Stimulator
When does this become dangerous?
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Back to back within a short period of time
Last longer than 5 minutes
Seizures continued
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Does not return to normal within the
individuals normal pattern
Unusual seizure patterns
Turns blue, aspirates, injures self
First Aid video
Thyroid Issues
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Hypo
Sensitive to cold
Constipation
Hoarse voice
Weight gain
Aches and pains
Depression
Muscle weakness
> cholesterol
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Hyper
Heat intolerance
Diarrhea
Anxious
Insomnia,fatigue
Tremors
Low BP
Asthma Early Warning Signs
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Sneezing
Moodiness
Headache
Runny/stuffy nose
Coughing
Chin or throat itches
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Tiredness
Dark circles under
eyes
Poor exercise
tolerance
Trouble sleeping
Asthma Symptoms
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Wheezing
Coughing
Shortness of breath
Chest tightness
Airways changes- narrow and fill with a
thick mucus
Severe Asthma Symptoms
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Severe coughing
Wheezing
SOB and chest
tightness
Difficulty talking
Walking causes SOB
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Nasal flaring
Substernal
retractions
Bluish color to lips
Hunched shoulders
Asthma
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Keep track of symptoms and when they
occur
Know the warning signs
Know when intervention is needed for
this consumer
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Medication
Call doctor—call 911
Asthma
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May evolve into bronchitis or
pneumonia
May aggravate other health issues
May increase feeding difficulties
If nebulizer meds ordered-get the
training
Psychiatric Co-Issues
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Subject to same psych illness as anyone
else but is 30-70% higher
Anxiety
Depression
Bi-Polar
Obsessive compulsive
Thought disorders
Psych cont
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ADHD
Other maladaptive behaviors
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Sleep disorders
Aggression
Self-injurious Behavior
Impulsiveness
Psych Issues
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A mismatch between needs,
abilities,and goals of a consumer with
his/her environment
Frustration and confusion our
consumers feel as a result of cognitive
and physical challenges and limitations
Multi origins-biological, psych., and
environment all factor together
Psych cont
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Find and understand the causes
Evaluate medical, psychological, and
environmental inputs
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Physical, and lab work to rule out infection
and metabolic disorders, GERD?, Cardiac?,
Orthopedic-arthritis
Medication side effects?
Treatment - Psych
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Medication (with)
Behavior modification, Psych/behavioral
therapy
Requires a collaborative approach
Evolves a plan, consumer oriented and
approved, all supports
Hazards of Immobility
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Low BP, postural hypotension
Heart works 30% harder
May have blood clots
Lowered muscle tone
Low rate of metabolism
Hinders respirations, poor coughs
Immobility
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Poor air exchange
Eats less
Body stress leads to slow stomach
emptying and diarrhea
Osteoporosis
Skin breakdown
Immobility
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Urinary track infections, kidney stones
Incontinence
Dehydration
Reduces consumer’s interaction with
environment > behavior issues