Global best practice in Care, Rehabilitation and Research
- Locomotor disability and Dwarfism
Dr P K Sahoo, HOD, Dept of PMR, SVNIRTAR, Olatpur, Cuttack, Odisha
Locomotor disability forms the major proportion of the total disability
population in India. As per Current census 2011, locomotor disability constitutes
20.3%among all disabilities. The figure may come down after RPWD Act 2016,
as some of the conditions that were coming under locomotor disability
identified as separate individual categories like dwarfism, muscular dystrophy,
some chronic neurological conditions etc. Locomotor disability includes a person
with-
(a) loss or lack of normal ability to execute distinctive activities associated
with the movement of self and objects from place to place
(b) physical deformities, other than those involving the hand or leg both,
regardless of whether the same caused loss or lack of normal movement
of body
The conditions may include:-
- Paralysis of limb or body
- Deformity of limb
- Maximum Loss of limb - Amputation
- Dysfunction of limb
- Deformity of joints of limbs
- Deformity of the body other than in limbs eg. Hunch back, deformed spine
etc
Causes of Locomotor disability:-
• Traumatic- RTA, fall from height, domestic violence, natural calamaties,
Burn injuries
• Congenital- deformities of hand ,foot, limbs, spine, amputees
• Developemental- Storage disorders, scoliosis, genuvalgum/ varum
• Infective – TB, Leprosy, polio, osteomyelitis
• Inflammatory – RA, Ank spond, psoriasis
• Neoplastic- Osteosarcoma, ewings sarcoma
• Nutritional- ricket, scurvy, osteomalacia, flurosis
• Geriatric – CVA, Cardio respiratory, OA, Osteoporosis, osteomalacia
Dwarfism
As per RPWD Act, 2016- “Dwarfism means a medical or genetic condition
resulting in an adult height of 4 feet 10 inches (147 centimetres) or less
Types:
• Proportionate- Hormonal, metabolic- GH, Pitutary, Kidney diseases
• Disproportionate- skeletal dysplasias
- Achondroplasia
- Spondyloepiphyseal dysplasia
- Diastrophic dysplasia
Associated conditions that adds to their disability:-
• Associated limb anomalies
• Cleft lip, palate
• Spinal canal stenosis
• kyphoscoliosis
Achodroplasia s forms the major category of dwarfism characterised by-
• a large head with a prominent forehead
• a flattened bridge of the nose
• protruding jaw
• crowded and misaligned teeth
• forward curvature of the lower spine
• bowed legs
• flat, short, broad feet
• "double-jointedness
Best care and rehabilitation can be provided to the persons with locommotor
disability by-
Measures of prevention
Early identification and intervention
Prevention of primary physical impairment:-
• To prevent physical impairments arising from avoidable diseases, e.g. by
health education, nutrition and immunization.
• To prevent physical disabilities resulting from trauma, e.g. by seeking
ways to prevent accidents.
Prevention of secondary physical impairment:-
To prevent or at least limit the development of physical impairment- by early
referral and by prompt & appropriate treatment- by family, physical therapist,
orthopedic surgeon and other members of rehabilitation team.
Early Intervention clinics:-Early identification and early intervention is one of
the key to success of Rehabilitation. New born to 3yrs of age can be included in
early intervention clinic.
Paradigm shift of Loco motor disability model:
Implementations of RPWD Act 2016, strengthen and empower the persons with
special need from a charity model to human right model with equal opportunity
and equal rights with full participation in the main stream of society.
Human rights model
Social model UNCRPD important instrument
Evolving capacity
Medical model Legal capacity
Charity model
Constitutional and legal obligations to value education for persons with
disability:-
• RCI Act 1992- Trained teachers to children with disability
• PWD Act- Appropriate environment to children with disability
• Right of children to free & compulsory education Act 2012- Free and
compulsory education to children with disability
Major barriers: Global concept to have Barrier free environment for PWDs
• Physical barriers - Accessibility
• Attitudinal- Education, jobs, full participation
• Lack rehabilitative equipment
Integrated solutions-
• Rehabilitation equipment
• Access
• Attitudinal changes- society for all
Research:-
• Assistive technology
• Stem cell
• Ambulatory devices
• Genetic studies
• Molecular and cell biology and basic science
Developments of technologies that can help persons with locomotor disability
to work more effectively in a competitive environment-
• Prosthetic controlled by muscle activities
• 3D printed prosthetic
• Modular prosthetic limb
• 3D printed wheelchair
• Smartphone-controlled bionic prosthetic,
• Crutches having joints
New technologies such as 4D technology and brain-computer interface (BCI) will
emerge and potentially be a game-changer for the PwDs in India
Brain implant is one of the most critical milestones achieved in term of
technology and is likely to impact locomotor disability sector in India between
5–20 years. It can help people with locomotor disability to regain the movement
of their paralyzed limbs. This technology is in a nascent stage
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National Workshop on Physical and Mental Disabilities 23rd October,2018, New Delhi
Global Best Practices in Care ,
Rehabilitation and Research-
Speech Language and Hearing
Impairment.
Dr. S.P. Goswami, Ph.D ( Sp& Hg.), MBA, PGDHRM , CV Raman Fellow , UIUC, USA Head, Dept. of Tele Center for Persons with
Communication Disorders, AIISH [email protected]
People with communication disabilities are clearly in the
particularly difficult position of being at the bottom of the “
hierarchy of impairments ”(Deal, 2003): a pecking order
which is active both on “ the inside ”amongst disabled people
themselves and from “ the outside ”by those who are not
disabled. This is actually a hierarchy of exclusion.
Physical or Visual
Impairments
Less excluded from
society
Cognitive,Communicatio
n and Behavioral
difficulties
More excluded from
society
(World Health Organization and The World Bank, 2011)23-10-2018 2Dr S P Goswami
People who behave, think, or communicate in atypical ways are
easily consigned to the margins in communities and become
liminoid (Murphy, Scheer, Murphy, &Mack, 1988
This seems to make it acceptable to deny their humanness and
treat them in ways that would clearly be unacceptable if applied
to other types of people. They are thus denied their human
rights in the most fundamental of ways
23-10-2018 3Dr S P Goswami
• For unimpaired people it is relatively easy to understand and empathize with physical difference.
• For example, it might be easy to imagine what it would be like not to walk and therefore to understand the need to remove physical barriers and introduce ramps, rails, lifts, etc.
• However, if a person ’ s behaviour and communication appear very different, this strikes at the heart of others ’ability to see them as someone with ordinary feelings, aspirations, and experiences, in fact perhaps to see them as a person, as human.
23-10-2018 4Dr S P Goswami
GLOBAL-BEST PRACTICES
INFRASTRUCTURE
CLINICAL PRACTICE
RESEARCH
ADVOCACY AND
LEADERSHIP 23-10-2018 5Dr S P Goswami
Building
Space
Faculty Clinical staffs
Supporting staffs
Technological aids
Library and Resources
Safety and Security
Privacy
INFRASTRUCTURE
23-10-2018 6Dr S P Goswami
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• http://www.rehabcouncil.nic.in/writereaddata/assessment_report_format.pdf
• https://www.asha.org/uploadedfiles/sp2016-00343.pdf
• https://audiology.asn.au/Tenant/C0000013/Position%20Papers/Other%20documents/Scope%20of%20Practice%20All-in-one%2020170119.pdf
• https://www.speechpathologyaustralia.org.au/spaweb/Document_Management/Public/SPA_Documents.aspx#anchor_scope
23-10-2018 7Dr S P Goswami
Assessment
Implemetation
Analysis and Interpretation
Universal Documentation
Diagnostic Terminologies
Planning EBP Social Security
Referrals
Insurance systems
CLINICAL PRACTICE
23-10-2018 8Dr S P Goswami
• Importance of Patient centric approach and EBP
• Issues concerning privilege,flexibility, salary structure.
• Choice of profession.
• Promotional avenues.
• Board certifications and renewals.
RESEARCH-GLOBAL
CLINICAL
RESEARCH
HARDCORE
RESEARCH
JACK OF ALL TRADES, MASTER OF NONE!
23-10-2018 9Dr S P Goswami
TrainingOrganisational
Liaison and Planning
Mentor Courses
Resource Allocation
Patient Management
ADVOCACY AND LEADERSHIP
23-10-2018 10Dr S P Goswami
SCOPE OF PRACTICE-ASHA,2016
23-10-2018 11Dr S P Goswami
Professional practice domains:
Service delivery domains
1.Advocacy and
outreach
2.Supervision
3.Education
4.Administration/lead
ership
5.Research
https://www.asha.org/policy/sp2016-00343/
1.Collaboration
2.Counseling
3.Prevention and
Wellness
4.Screening
5.Assessment
6.Treatment
7.Modalities,
Technology, and
Instrumentation
8.Population and
Systems23-10-2018 12Dr S P Goswami
10/21/2018
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SCOPE OF PRACTICE –INDIA ( S.P Goswami,2003)
23-10-2018 13Dr S P Goswami 23-10-2018 14Dr S P Goswami
23-10-2018 15Dr S P Goswami 23-10-2018 16Dr S P Goswami
23-10-2018 17Dr S P Goswami 23-10-2018 18Dr S P Goswami
10/21/2018
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23-10-2018 19Dr S P Goswami 23-10-2018 20Dr S P Goswami
23-10-2018 21Dr S P Goswami
• “Poor solution for poor people”
• Insurance system
• Not patient centred approach
• Poor referrals
• No punishable offences in case of malpractices
• Quality control measures
PRACTICAL ASPECTS/CHALLENGES FACED
23-10-2018 22Dr S P Goswami
Organisational
reviews
Accreditation procedures
Quality Programs
Performance and appraisal
procedures
Strategic Planning
Processes
Quality checks and Balances
23-10-2018 23Dr S P Goswami
Self
Actualization
Self esteem/ Recognition/ Achievement
Belongingness/ Love/ Friendship
Safety/Security/Shelter/Health
Physiology (Hunger, Thirst, Sleep etc)
Maslow’s Hierarchy of Needs (Theory
of motivation)
23-10-2018 24Dr S P Goswami
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Best Practices comes with ATTITUDE!A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26
S K I L L S
19 11 9 12 12 19= 82
K N O W L E D G E
11 14 15 23 12 5 4 7 596=
H A R D W O R K
8 1 18 4 23 15 18 11 = 98
A T T I T U D E
1 20 20 9 20 21 4 5
100=26Dr S P Goswami23-10-2018
10/21/2018
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Best Practices in Leprosy-cured Persons: Care, Rehabilitation and Research
23 October, 2018 | New Delhi
Dr Mary VergheseExecutive Director
The Leprosy Mission Trust India
ABOUT US
Founded in 1874 in Ambala, India.
Largest and oldest leprosy-focused NGO in India with presence in 10 states.
Comprehensive programme on:
- Healthcare
- Education, skills training, livelihoods
- Advocacy and rights
- Research (molecular biology, social science, clinical)
- Training
www.leprosymission.inwww.leprosymission.in
BEST PRACTICES - CARE
Holistic healthcare across the lifespan of the person:
awareness and early diagnosis
treatment compliance
disability management
- management of reaction and neuritis
- self-care
- ulcer management
- corrective surgery
- footwear
- aids and appliances
counselling services
psycho-social support
follow-up after release from treatment
www.leprosymission.in
A corrective surgery for claw hand
A self-care session at TLM hospital
www.leprosymission.in
BEST PRACTICES - CARE
Hospital and community linkage
- Community volunteers trained to suspect and refer leprosy cases and
complications
- TLM Hospital confirms diagnosis and refers for treatment to PHCs
ASHA workers follow up and ensure completion of treatment
TLM Hospital trains on self-care, use of aids and appliances and community
volunteers follow up on self care practices, wear and tear of appliances
Enabling factor:
Comprehensive services at community and institutional level
www.leprosymission.inwww.leprosymission.in
BEST PRACTICES - REHABILITATION
www.leprosymission.in
People-centred and participatory
- people affected by leprosy themselves are the key actors inidentifying and addressing priorities
- strengthening collectives/champions
- building capacity in accessing information, resources, services and decision-making structures
- Community-based information centre
A champion receiving the best social worker award
BEST PRACTICES - REHABILITATION
Community-Based Vocational Education and Training
- Taking vocational training and employment support to people
affected by leprosy in their communities
- -Accessible: Moving from geography to geography
- Flexible with timings, study materials, and methodology
- Appropriate: provides employment support, life skills training,
functional literacy, capacity on rights, disability management and
community awareness on leprosy
Producer company
- Producer company owned and run by people affected by leprosy
- Established enterprises, such as dairy, poultry
www.leprosymission.in
Annual General Body meeting of a producer company
Community-based vocational training
www.leprosymission.in
10/21/2018
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BEST PRACTICES - RESEARCH
www.leprosymission.in
Emancipatory research – involving people affected by leprosy (stigma, inclusion and participation; challenges faced in accessing mainstream resources)
Research evidence used in developing protocols, procedures and scalable/adaptable approaches and strategies across varied areas:
- toolkit for challenging leprosy-related stigma
- GIS mapping for effective and targeted interventions
- post RFT (released from treatment) surveillance to prevent disabilities
- customised, contemporary MCR protective footwear
www.leprosymission.in
THANK YOU
Global Best Practices in Care, Rehabilitation and Research –
Deafblind.
Deafblindness is a niche group of disability characterised by severe communication
difficulties leading to extreme isolation. Very often the lack of interaction has led to
overdependence on a interface, either in the form of personal interpreters or tothe use of
assistive technology to the few who have access to it.
Despite having such world-renowned persons with deafblindness as Helen Adams Keller
(first deafblind graduate in 1904 in USA), deafblindness remains an invisible condition and
people with deafblindness remain an invisible population in mainstream society.
The persons withdeafblindness represent an extremely heterogenous population including
persons who would require life long care to persons who could become quite independent
on receiving proper intervention.
Intervention services over the years have also evolved. With increased awareness and
support for early detection in the form neonatal screening, the best practices advocate
early detection, leading to comprehensive early intervention services. The school going age
children have either access to centre/home based rehabilitation. The inclusion presently in
India is by and large restricted to children with acquired deafblindness for whom
communication is not a limiting factor. The access to formal education, use of technology
opens up the door beyond boundaries. To reach to this stage, advocacy has played a major
role. The journey so far with the first RCI recognised Teachers Training Centre offering
diploma in deafblindness to having included a module on deafblindness in all diploma and
B.ed courses cross disability, has been one of extreme satisfaction.
Again the efficacy of intervention not only depends on the quality of intervention but also
on the individual capacity to learn. It has been seen that the congenital deafblind individuals
who have not only dual sensory loss but also accompanied by intellectual disability, are the
ones who often require lifelong care, which unlike the global scenario, in India is the sole
responsibility of the family with little or no help from the state.
Consultation with different stake holders offer valuable perspective and can be the basis of
research in the field of deafblindness. Though the history of this condition can be traced
even before 1880, the development in terms of research and practice specific to this
population is still in its infancy stage (Dammeyer, 2015). This invisibility could be attributed
to various reasons.
Researchers find it challenging to collect data from people with deafblindness who have
significant communication challenges. Furthermore, there exists no distinct methodology to
conduct deafblindness research.
There is very limited scientific research that directly voices the opinions and perceptions of people with deafblindness themselves. Most research conducted on deafblindness has very
often been collected not from persons with deafblindness themselves, but rather through individuals serving as proxies (parents, caregivers, or professionals) attempting to understand the experiences, needs, and concerns of these people with deafblindness. In cases where research has directly included people with deafblindness, it is very often
limited to the concerns of people with acquired deafblindness, rarely exploring the
perspectives of persons with congenital deafblindness.
The challenges faced by persons with deafblindness with aspect to care, rehabilitation or
research could be due to multiple factors such as –attitudinal barriers, paucity of trained
manpower, inclusion still restricted to pockets, acceptance by schools huge problem. But
challenges are meant to be faced and overcome.
“Not everything that is faced can be changed, but nothing can be changed until it is faced." -
James Baldwin
Nandita Saran Head –Centre for Multiple Disabilities National Association for the Blind Delhi
10/22/2018
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Muscular Dystrophy
Care, Rehabilitation and Research
md INDIA
Dr V.Viswanathan & S.Sureshkumar
Muscular Dystrophy Association India
Chennai
Incidence of Disability
Physically challenged population
accounts for 2.22% of the population
Tamilnadu accounts for 1.6 million
persons with disability
Visual ( 19%) Speech (19%), Multiple
disability (8%) Movement (20%).
(A Statistical Profile 2016, MOS&PI)
Muscular Dystrophy - Types
Congenital MD
Sarcoglycanopathy
Limb Girdle MD
Duchenne MD
Duchenne Muscular Dystrophy
Most severe type of dystrophy
One in 3500 live male birth
In India 121 crores populations,expolating from the data we should have approximately 1,77,142 patients with DMD.
Ambulation is lost between 10 and 12 years
Premature death due to respiratory and cardiac complications
Minimum standards of care for children with DMD
Child with DMD
Orthopaedic
Pulmonary
Neurologist
Cardiac
Psychosocial
Rehabilitation
Approaching Muscle
Disease
• Investigation
• Diagnosis
• Classification of Different Muscle disease
• Clinical & Physical evaluation
• Management-Medical & Rehabilitative
• Provision of Orthotics & Wheelchairs
• Guiding in their Education
• Follow-up
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Goals of treatment
• Slow Disease Progression
• Control Secondary Complications
• Improve Quality of Life of the Patients
and Carers.
Medical Management
• Neurologist
• Cardiologist
• Pulmonologist
• Orthopedic Surgeon
Evaluation
Manual muscle testing
Quantitative Muscle testing
Pulmonary Function tests
Timed tests
Arm and Leg function tests
Tightness/Contractures
Deformities
Mode of Ambulation
Physiotherapy Goals
To Maintaining good range of movement
and symmetry at different joints.
To maintain the best possible function.
To prevent the development of fixed deformities
To prevent pressure problems with the skin.
To aid in standing and walking
Physiotherapy
Approaches
Stretching
Range of Motion Exercises
Positioning
Breathing Exercises
When walking is difficult and no longer possible
Appropriate wheel chair provision
Stretching
Splints
Orthotic aids like braces
Pulmonary care
Spinal Support
10/22/2018
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Assistive devices Custom made wheel chairs
• Head & Neck: Head and neck Support
with Lateral Controller
Maintain neutral cervical spine and head position
• Trunk: Lateral Trunk Supports
-Improves trunk stability & alignment
-Improves pelvic alignment
• Hip: Lateral hip guides
-Improve weight distribution on pelvis &
pelvic alignment
• Knee: Lateral Knee guides
- Maintains lower extremity and pelvic
alignment, reduces increased abduction.
Provision of respiratory care at home
We have been able to procure some BIPAP machines for use by the children with NMD at home
Our Physiotherapist along with our Pulmonologist take of their needs
We are also doing regular sleep studies now for children with NMD at home
We hope to extend this to more children and families in the future
Medical School Day care centre
Doctor
Consultation
Investigations
Dispensing
Medicines
Referral
Follow up
Model school road,
Thousand lights
Barrier free school
10.00am to 2.00pm
Qualified & trained
teachers
1st to 8th standard
Computer assisted
education
Chennai Corporation
Education Physiotherapy Transport
Qualified
physiotherapist
Separate room
Community Care
Covering
- South chennai
- North chennai
- Central
Chennai
One Bus
Two Van
Pick & drop
Model school road,
Thousand lights
Physiotherapy
Detailed Evaluation
Treatment
Training the carers
Maintaining the
registries
Training the other
centres in TamilNadu
Conference, printing
and training materials
KKCTH,
Nungambakkam
MODEL CENTRE FOR MUSCULAR
DYSTROPHY
MDA School at Chennai
MDA school – 1st of its kind with barrier
free access and transport facilities
Annual days at our MDA school
10/22/2018
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FUN DAYS / OUTINGS
Tiger caves - magic show
With the Indian Cricket team
At the IA hangar Fun bus ride
Snap shot of short term and long term future goals
2019
2018
2020
2021
MDA multi-disciplinary clinics
More awareness creation about MD
Research in to assistive devices technology with Research centers
Commencing the National registry with ICMR
National Patient registry
Natural History Study nationwide to set up Standard of care
Setting up the International centres for NMD in various states
Creating more awareness about the school & improving services
Identifying the needs in our Country
Training for physiotherapists & resource persons
Setting up satellite centers / schools
Setting up an orthotics unit / wheel chair services
Facilitating more barrier free schools all over the country
Linking / helping other states to set up similar units
Acting as the clinical lead for research
Improving the quality of the assistive aids / devices/wheel chairs
Clinician OPD
Physiotherapy
Basic
Laboratory3
Psycho-Social
Intervention
DNA extraction
and Analysis
Genetic
Counseling
Orthotics
wheel chair
manufacture
Waiting
hall
Registry
Relevant
Speciality
OPD
Play Area
Cafeteria
Muscle
pathology
g
immunohis
t
InfrastructurePart of the global initiative to find solace / cure for DMD
md INDIA
www.mdindia.net
Conclusion
Treatments aim to control and manage your
symptoms.
Muscle exercises help because being inactive can make the disease worse.
Physiotherapy can help maintain muscle strength and
flexibility.
Physical aids such as braces or wheelchairs can help give more mobility.
These measures aim to give people with MD a better quality of life.
Parental expectations !!