global best practice in care, rehabilitation and research...

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

10/21/2018

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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.


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


10/21/2018

2

• 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


Assessment

Implemetation

Analysis and Interpretation

Universal Documentation

Diagnostic Terminologies

Planning EBP Social Security

Referrals

Insurance systems

CLINICAL PRACTICE


• 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!


TrainingOrganisational

Liaison and Planning

Mentor Courses

Resource Allocation

Patient Management

ADVOCACY AND LEADERSHIP


SCOPE OF PRACTICE-ASHA,2016


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

http://www.rehabcouncil.nic.in/writereaddata/assessment_report_format.pdf

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 Papers/Other documents/Scope of Practice All-in-one 20170119.pdf






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



10/21/2018

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• “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


Organisational

reviews

Accreditation procedures

Quality Programs

Performance and appraisal

procedures

Strategic Planning

Processes

Quality checks and Balances


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)


10/21/2018

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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

1

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


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


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


Annual General Body meeting of a producer company

Community-based vocational training


10/21/2018

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BEST PRACTICES - RESEARCH


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


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

1

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

10/22/2018

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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

3

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

4

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 !!