Do You See What I See

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Do You See What I See?

• Alya Reeve, MD
• Associate Professor, Depts Psychiatry and
  Neurology
• Rick Madden, MD PMS- Belen Clinic
• Carla Fedor, RN, CDDN
• Continuum of Care Project

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Overview

• What makes MR a significant factor
• Challenges in health care for persons with MR
• SNC a model for building capacity
• Role of psychiatric assessment in
  multidisciplinary treatment approach
• More questions

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Mental Retardation

• Mental retardation is a disability characterized
  by significant limitations both in intellectual
  functioning and in adaptive behavior as expressed
  in conceptual, social, and practical adaptive
  skills. This disability originates before age
  18.
• AAMR, 2002

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Mental Retardation (2002, cont.)

• The following five assumptions are essential to
  the application of this definition
• Limitations in present functioning must be
  considered within the context of community
  environments typical of the individuals age
  peers and culture.
• Valid assessment considers cultural and
  linguistic diversity as well as differences in
  communication, sensory, motor and behavioral
  factors.
• Within an individual, limitations often coexist
  with strengths.
• An important purpose of describing limitations is
  to develop a profile of needed supports.
• With appropriate personalized supports over a
  sustained period, the life functioning of the
  person with mental retardation generally will
  improve.

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State Definition

• Onset before age 22 is documented
• IQ lt 70
• Exceptions Aspergers syndrome, CP
• Significant impairment in adaptive functioning
  that will persist
• Usually meets criteria of mental retardation
• Used in determination of eligibility for
  medicaid waiver

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Surgeon Generals Report 2002

• Like other Americans, persons with mental
  retardation grow up, grow old, and need good
  health and health care services in their
  communities.
• National Conference December 5-6, 2001
• Identified goals, action steps, research agenda,
  and potential outcomes

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Surgeon Generals Report 2002

• Goals to Improve the Health of People with MR
• Health promotion and community environments
• Knowledge and understanding
• Quality of health care
• Training of health care providers
• Health care financing
• Sources of health care

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Continuum of Care MISSION

• The mission of the Continuum of Care Project is
  to increase the capacity of New Mexicos health
  care system to provide lifelong quality health
  care for people with developmental disabilities
  and related chronic conditions. We do this by
• creating learning opportunities
• promoting best practice policies, and
• offering specialized developmental disabilities
  services

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Practical Problems

• LLHTS closing (1997) planning was needed
• Liaison with community physicians
• Acting out in waiting rooms
• Difficult to diagnose b/c communication issues
• Working with a team, rather than family
• Increase capacity
• Individual learning style and motivation

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Barriers Identified (CMS survey)

• Physicians didnt feel trained in medical school
• Reimbursement for services wasnt appropriate
• Time management (these patients take longer than
  routine verbally coherent patients)

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Adult Learning Issues

• Visual
• Auditory
• Kinesthetic
• Logical, linear v. Holistic, impressionistic
• Two-dimensional three-dimensional
• Locus of control
• Passive Active
• Repetition needed for learning, encoding
  interest is very important for retention of
  material presented

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Clinician Factors

• Choice of clinical practice
• Solo specialist
• Group
• Risk taking find the comfort level and push it
• Disease-focused or person-focused
• Existing methods of learning that are applied

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Clinician Learning Methods

• Lecture
• Seminar
• Apprenticeship
• Teaching
• Experimentation
• Peer-peer referenced

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Identifying a clinic

• Started where we were requested
• Guardian conflict
• Waiting room trashed
• Staff attacked
• Chronic Conditions Management (CCM) model
• Go on site
• Pay their time (of not earning revenue)
• Successful in rural N.H.

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SPECIAL NEEDS CLINIC - BELEN

• Well-established community based practice
• High proportion of ex-residents of LLHTS
• Motivated primary care physician (Dr. Madden)
• Team
• PCP (also Dr. Seeger Dr. Whitemeyer)
• Neurologist (Dr. Vickers)
• Systems support (Patricia Beery/J. Thorne-Lehman)
• Psychiatrist (also Dr. Silverblatt)
• Nurse (C. Fedor)

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SNC-BELEN

• Initially scheduled monthly graduated to every
  three months
• Follow along more challenging patients see
  patients new to the practice
• Available to schedule or do curb-side consults
  to other practitioners of the clinic
• See 3-5 patients in morning (usu 4)

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CASE STUDY-1

• JB is a 38 year old male with Down syndrome who
  suffers from GERD and Hypothyroidism. He had
  been in relatively good health since adolescence.
• At a visit to his PCP on January 20, he was head
  banging and his appetite had increased
  dramatically. He had gained weight. Initially,
  he was treated with Zantac and then Prilosec for
  GERD, and Ibuprofen for presumed pain of
  indeterminate origin.
• On February 2, he initially improved, according
  to staff. Ibuprofen and Prilosec were increased.

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CASE STUDY-1

• But on March 2, things had deteriorated. JB was
  wheezing and found to have pneumonia, was
  hospitalized. With treatment he improved.
  Pneumonia reoccurred twice more each time it was
  accompanied by head banging and lethargy. On May
  10, a video swallow study showed that he was at
  risk for aspiration.
• A modified diet (thickened liquids only) has
  decreased the frequency of pneumonias. The staff
  no longer report any head-banging. His visits to
  the psychiatrist for SIB have slowed to none in
  the past year.

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Symptom Etiology

• To explain behavior
• To watch for related conditions or
  complications
• More specific therapy
• To predict course

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Narrowing It Down

• Careful history and physical
• Search for more information from informants
• and past record
• Consider unwanted drug effects, drug
• interactions always
• Stepwise evaluations are the best approach
• Dont overreact or underreact
• Use PCP first

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Our Experiences

• Lots of comorbidities
• Change in behavior may be the initial signal
• Common conditions present atypically
• Uncommon conditions may be common
• Findings may be missed on abbreviated H P
• Balance need for more testing with reasonable
  stepwise approach

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Our Experiences

• Workup may be considered complete when improving
  or comfortable
• Avoid stereotyping
• Assessment and treatment will continue to evolve
• Communication is key working with patient and
  a team

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Our Experiences

• Multidisciplinary Teams
• One location ? increased integration of
  discipline-specific knowledge
• Common resolution of priorities
• Separate locations
• Loss of information loss of nuances
• Patient/team struggle to comprehend
• Problems perceived as non-overlapping

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CASE STUDY-2

• IA is a 71 year old nonverbal male with
  severe mental retardation, degenerative
  arthritis, scoliosis and kyphosis. On April 4,
  he presented to his PCP with cough and fever. He
  was noted to be leaning to the left in his gait,
  which was a change from his baseline. His
  pneumonia was treated and a feeding gastrostomy
  tube was placed. Subsequently, a head CT scan
  revealed a frontal infarct (stroke). No source
  for the stroke was found on further testing. His
  ability to walk was more limited than it had been
  before. He began to lose weight, despite
  adequate nutrition and his left sided weakness
  worsened. He no longer smiled.

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CASE STUDY-2

• On October 20, in consultation with a
  psychiatrist, a diagnosis of depression was made
  and treatment started. He has since improved
  noticeably actively interacting with familiar
  staff and relatives, participating in day hab
  improved sleeping through the night.
• Dose of SSRI needed to be adjusted twice
• Physical stamina much improved
• Making regular and direct eye contact with
  staff calm regular sleep appetite returned.

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Communication

• All team members must be included
• Provide complete information
• Provide information in writing

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Teams Work

• Information gathering
• Individual
• Family
• Agency staff
• What are the concerns? Why?
• Is this a new or reoccurring problem?
• Record of written data recent and old

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Importance of Baseline

• Difference noted from past physical exams
• Promotes each person as an individual
• Individual coping strategies
• Directs treatment protocol

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CASE SCENARIO-1

• JS is a 24 year old man who has Sturge Weber
  Syndrome. He has a severe developmental
  disability, port wine stain, glaucoma and seizure
  disorder. He is on a variety on anticonvulsant
  medications, eye drops, vitamins and bowel aids.
  Recently, he has been experiencing severe
  emotional outbursts with damage to property,
  injury to staff and severe self abuse. He
  sometimes complains of headaches. Seizures are
  relatively poorly controlled but this is not new.
  Recent anticonvulsant levels have been in the
  therapeutic range. What could be going on here?

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CASE SCENARIO 2

• WJ is a 39 year old male with a diagnosis of
  Cerebral Palsy, GERD and seizure disorder. He
  has profound Mental Retardation. His staff
  reports that WJ is a very happy person, is very
  mobile and likes to eat. He has always had some
  regurgitation but now he regurgitates his food
  daily, especially in the morning. His weight has
  remained stable. He has not had a witnessed
  seizure in several years. What could be going on
  here?

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Assessment Strategy

• Assisting primary physician
• Collect original data
• Direct observation interview
• Historical details
• Develop sense of range of experiences and
  behavior of the individual (expectations)
• Review results of interventions over time

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Assessment Strategy

• Age-appropriate disorders occur
• Depression, anxiety, psychosis, dementia
• Behavioral changes often the final common
  pathway (of communication, of illness)
• Medication effects are mixture of intended and
  unintended effects on neurotransmitters
• Must be hypothesis driven hence, must
  re- evaluate hypotheses on frequent basis

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Assessment Strategy

• Historical patterns
• Medication effects
• Observation verbal and non-verbal responses
• Diagnostic hypothesis ? Treatment trial ? Revise
  hypothesis or refine treatment
• Retain high degree of suspicion for medical
  conditions pain, GI, endocrine

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Other Clinical Sites

• Resident training
• La Familia Santa Fe, Roswell FP, Las Cruces
• CCM sites
• Tohatchi, Lovelace Espanola, San Juan Peds
  Farmington, Grants
• Psychiatric Pilot Project DDMI
• Taos Bob Franklin
• Next - ? Clovis

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Conclusions

• Evident increased confidence and expertise
• Collaboration within community
• Patient and team reports
• PCP is active in initiating contact with us/
  teams/ local organizations
• Questions
• Can we collect information about unsuccessful
  interactions?
• What are meaningful outcome measures