Hkkx II—[k.M 3 —m —mi&[k.M (ii)

26 · 1 62 43.42

27 · 1 63 45.13

28 · 1 64 46.84

29 · 1 65 48.55

30 · 1 66 50.26

31 · 1 67 51.97

32 · 1 68 53.68

33 · 1 69 55.39

34 · 2 70 57.1

35 · 3 71 58.81

36 · 4 72 60.52

37 · 5 73 62.23

38 · 6 74 63.94

39 · 7 75 65.65

40 · 8 76 67.36

41 · 9 77 69.07

42 · 10 78 70.78

43 · 11 79 72.49

44 · 12 80 74.2

45 · 13 81 75.91

46 · 14 82 77.62

47 · 15 83 79.33

48 · 16 84 81.04

49 · 17 85 82.75

50 · 18 86 84.46

51 · 19 87 86.17

52 · 20 88 87.88

53 · 21 89 89.59

54 · 22 90 91.3

55 · 23 91 93.01

56 · 24 92 94.72

57 · 25 93 96.43

58 · 26 94 98.14

59 · 27 95 100

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0 · 36% d s lykbu ?kksy d s lkFk ,d Vîwc esa u sLVªk sQ + u sdM vkà Çlxy Vîwc jsM l sy vksLek sfVd Ý SfxfyVh VsLVA β dk irk yxkus ds fy, ,pch ,pih,ylh ds uewus p;u djrs gq, LØhÇux tk¡p ds :i esa maxyh ij pqHku tk¡p dh tk ldrh g SA

2 · The said guidelines for the purpose of assessing disabilities at Annexure II shall supersede the guidelines for evaluation of various disabilities and procedure for certification vide Government of India, Ministry of Social Justice and Empowerment notification number 16-18/97-NI I. dated the 1 st June 2001 and the guidelines for evaluation and assessment of mental illness and procedure of certification vide Government of India, Ministry of Social Justice and Empowerment notification number 16-18/97-NI dated the 18 th February 2002, except as respects things done or omitted to be done before such supersession.

1 · 1. Guidelines for Evaluation of Permanent Physical Impairment (PPI) of Upper Extremities

1 · 2.1. ARM (UPPER EXTREMITY) COMPONENT

1 · 2.2. Principles of evaluation of range of motion (ROM) of joints

1 · 2.3. Principles of evaluation of strength of muscles:

1 · 2.4. Principles of evaluation of coordinated activities:

1 · 2.5. Combining values for the Arm Component:

1 · 3.1. HAND COMPONENT:

1 · 3.2. Principles of evaluation of prehension:

1 · 3.3. Principles of Evaluation of sensation:

1 · 3.4. Principles of Evaluation of strength

1 · 3.5. Combining values of hand component:

1 · 3.6. Combining values for the Extremity:

2 · Guidelines for Evaluation of Permanent Physical Impairment in Lower Extremity

2 · 1.1. MOBILITY COMPONENT

2 · 1.2. Principles of Evaluation of Range of Movement:

2 · 1.3. Principle of Evaluation of Muscle Strength:

2 · 1.4. Combining values for mobility component:

2 · 2. Stability Component

2 · 3. Extra Points

3 · Guidelines for Evaluation of Permanent Physical Impairment of the Spine

3 · 1. Permanent physical impairment caused by spinal injuries or deformity may change over the years, the certificate issued in relation to spine may have to be reviewed as per the standard guidelines for disability certification .

3 · 2. Permanent physical impairment should be awarded in relation to the Spine.

1 · TRAUMATIC LESIONS

4 · Non Traumatic Lesions:

4 · 1. Scoliosis is a condition in which an individual's spine has lateral, or side to side curvature. Although scoliosis is a three-dimensional deformity, on an x-ray, scoliosis curves can often look like a simple "S" or a "C" shape.

4 · 2. Scoliosis is defined with radiographs that includes a standing x-ray of the entire spine antero-posterior view, as well as the lateral view. Curve magnitude is measured in degrees using the Cobb method. A straight spine has a curve of 0º; any curve greater than 10º is considered scoliosis. Between 0ºand 10º is considered "postural asymmetry" which is not true scoliosis. The lateral radiograph is used to determine the thoracic kyphosis (or roundback appearance) and the amount of lumbar lordosis (swayback).

4 · 3. In general, the severity of the scoliosis depends on the degree of the curvature and whether it threatens vital organs, specifically the lungs and heart. The percentage of PPI shall be as follows:-

4 · 4. A person with scoliosis or kyphoscoliosis should be assessed for cardiorespiratory limitations if present. Additional weightage in % of permanent is to be given according to severity of involvement as assessed clinically or relevant investigations mentioned in the Guidelines under respective section.

4 · 5. In cases with scoliosis of severe type cardiopulmonary function tests and percentage deviation from normal shall be assessed by one of the following method whichever seems more reliable clinically at the time of assessment. The value thus obtained shall be added by combining formula.

4 · 6. Torso Imbalance:

4 · 7. KYPHOSIS

4 · 8. Torso Imbalance - Plumb line dropped from external ear normally falls at ankle level.

4 · 9. Miscellaneous conditions:

5 · Guidelines for Evaluation of Permanent Physical Impairment in Persons with Amputation (Amputees):

5 · 1. Basic Guidelines:

5 · 2. Upper Limb Amputations:

5 · 3. Lower Limb Amputations:

6 · Guidelines for Evaluation of Permanent Physical Impairment of Congenital deficiencies of the extremities

6 · 1. Functionally congenital transverse limb deficiencies are comparable to acquired amputations and can be called synonymously as congenital amputation. However, in some cases revision of amputation is required to fit in a prosthesis.

6 · 2. The transverse limb deficiencies therefore should be assessed on basis of the guidelines applicable to the evaluation of PPI in cases of amputees as given in the preceding chapter.

6 · 3. In cases of longitudinal deficiencies of limbs, due consideration shall be given to functional impairment.

6 · 4. In upper limb, loss of ROM, loss muscular strength and hand functions like prehension, etc shall be tested while assessing the case for PPI.

6 · 5. In lower limb clinical method of stability component and shortening of lower limb shall be given due weightage.

6 · 6. Apart from functional assessment, the lost joint/part of body should also be valued as per distribution given in the Guidelines for Evaluation of PPI in upper extremity and lower extremity amputation. The values so obtained shall be added with the help of combining formula.

6 · 7. In cases of loss of single bone in forearm the evaluation shall be based on the principles of evaluation of Arm component which include Evaluation of ROM, Muscle strength-and coordinated activities. The values so obtained shall be added together with the help of combining formula.

6 · 8. In cases of loss of single bone in leg the evaluation should be based on the principles of evaluation of mobility component and stability components of the lower extremity. The values obtained should be added together with the help of combining formula.

7 · Club Foot:

8 · 1. Lymphoedema:

8 · 2. Its severity is assessed and graded as follows:-

9 · Charcot’s Joint

10 · Guidelines for Evaluation of Locomotor Disability due to chronic Neurological conditions.

10 · 1. Assessment in neurological conditions is not the assessment of disease but the assessment of its effects, i.e. clinical manifestations.

10 · 2. These guidelines shall only be used for central and upper motor neurone lesions.

10 · 3. For assessment of lower motor neurone lesions, muscular disorders and other locomotor conditions, methods of evaluation as mentioned above will be used.

10 · 4. Normally any neurological assessment for the purpose of certification has to be done six months after the onset of disease; however, exact time period is to be decided by the Medical Doctor who is evaluating the case and has to recommend the review of certificate as given in the standard format of certificate.

10 · 5. Total percentage of physical impairment in any neurological condition shall not exceed 100%.

10 · 6. In mixed cases the highest score will be taken into consideration. The lower score will be added to it by the help of combining formula:

10 · 7. Additional rating of 10% will be given for involvement of dominant upper extremity.

10 · 8. Additional weightage up to 10% can be given for loss of sensation in each extremity but the total physical impairment should not exceed 100%.

11 · Stroke

11 · 1. The modified Rankin Scale (mRS) is a commonly used scale for measuring the degree of disability or dependence in the daily activities of people who have suffered a stroke or other causes of neurological disability.

0 · - No symptoms.

1 · - No significant disability. Able to carry out all usual activities, despite some symptoms.

2 · - Slight disability. Able to look after own affairs without assistance, but unable to carry out all previous activities.

3 · - Moderate disability. Requires some help, but able to walk unassisted.

4 · - Moderately severe disability. Unable to attend to own bodily needs without assistance, and unable to walk unassisted.

5 · - Severe disability. Requires constant nursing care and attention, bedridden, incontinent.

12 · Other Neurological Disability

12 · 1. Extent of Sensory Deficit Physical Impairment

12 · 2. Bladder disability due to neurogenic Involvement

12 · 3. Ataxia (Sensory or Cerebellar)

13 · Spinal Cord Injuries

13 · 1. The resulting impairment and disability after Spinal Cord Injury (SCI) is typically significant and devastating. The determination of impairment and disability after SCI is usually straightforward and may be accomplished by general categorization of an individual's neurologic and functional level. Although secondary medical difficulties, such as pressure ulcers, spasticity, deep venous thrombosis, heterotopic ossification, myopathic pain syndromes, restrictive pulmonary compromise etc., which may impact both impairment and disability, can arise at any time after SCI, neurologic and functional abilities are typically stabilized by twelve months.

13 · 2. Documenting impairments in a person with an SCI is best determined by performing a standardized neurological examination as endorsed by the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) Patients. Persons with Spinal Cord Injury are graded on the ASIA (American Spinal Injury Association) Impairment Scale.

13 · 3. The individuals with SCI shall be categorized into one of the four main diagnostic categories for the purpose of disability evaluation and certification:

14 · Acid Attack Victims

14 · 1. Definition "acid attack victims" means a person disfigured due to violent assaults by throwing of acid or similar corrosive substance.

14 · 2. Acid attacks cause chemical burns. Acids cause coagulation necrosis with precipitation of proteins. They can cause lifelong bodily disfigurement. The medical effects of acid attacks are generally extensive. Acids used in acid attacks may be acetic acid, carbolic acid, chromic acid, formic acid, sulphuric acid, nitric acid, hydrochloric acid, hydrofluoric acid, oxalic acid, phosphoric acid etc. The severity of the damage depends on the concentration of the acid and the time before the acid is thoroughly washed off with water or neutralized with a neutralizing agent. The acid can rapidly eat away skin, the layer of fat beneath the skin, and in some cases even the underlying bone.

14 · 3. Impairments resulting from acid burns are not restricted to the skin. Often, more than one system is involved, such as skin, musculoskeletal, respiratory, vision etc. Scarring represents a special type of disfigurement. Scars affect sweat glands, hair growth, and nail growth, and cause pigment changes or contractures and may affect loss of performance and cause impairment. The lymphatic system can be affected in the lower or upper extremity, causing chronic swelling of the leg and feet, or the arm and hand respectively.

14 · 4. Since majority of acid attacks are aimed at the face, eyelids and lips may be completely destroyed, the nose and ears severely damaged. Acid can quickly destroy the eyes, blinding the victim. The eyelids may no longer close, the mouth may no longer open, and the chin may become welded to the chest.

14 · 5. Given below are the frequently noted physical consequences of acid attacks:

14 · 6. Disability in acid attack victims is to be estimated by taking into consideration extent of damage in terms of area and depth, as is in cases of thermal injuries (burns). Good colour photography with multiple views of the area of involvement enhances the description. Every acid burn, regardless of the depth of injury, heals with some element of contracture. Contractures frequently require a series of staged surgical procedures before optimal function and cosmesis are achieved. Scar tissue is less tolerant of the everyday stress imposed on it than normal skin. An extremity can be considered impaired even if it has a full range of motion because of a poor quality of skin after the chemical burn- skin that is thin and fragile, likely to ulcerate easily even with minor injuries. Even people who have received skin grafts can have intolerance to sunshine, heat, cold or sensation.

14 · 7. Restriction of normal movement by contracture is not limited to the extremities. Scars around the trunk also can become tight and stiff. When a scar occurs over the trunk or anterior chest, severe and chronic postural changes can result which may cause secondary spinal deformity or altered respiratory function. A badly scarred perineum or buttocks may make sitting in one position for prolonged period painful and difficult.

14 · 8. The guideline for assessment shall be as follows:

14 · 9. The total % of permanent impairment/disability will not exceed 100%.

15 · Cerebral Palsy affected Persons with disabilities

15 · 1. Definition- "cerebral palsy" means a group of non-progressive neurological condition affecting body movements and muscle coordination, caused by damage to one or more specific areas of the brain, usually occurring before, during or shortly after birth.

15 · 2. The Gross Motor Function Classification System (GMFCS) should be used for evaluating cerebral palsy affected individuals. It is based on self-initiated movement, with emphasis on sitting, transfers, and mobility. This is a five-level classification system, and the primary criterion is that the distinctions between levels must be meaningful in daily life. Distinctions are based on functional limitations, the need for hand-held mobility devices (such as walkers, crutches, or canes) or wheeled mobility, and to a much lesser extent, quality of movement. At present, expanded and revised version of GMFCS is available (GMFCS- E&R).

15 · 3. The Manual Ability Classification System (MACS) describes how children with cerebral palsy (CP) use their hands to handle objects in daily activities. MACS describes five levels. The levels are based on the children's self-initiated ability to handle objects and their need for assistance or adaptation to perform manual activities in everyday life.

15 · 4. MACS can be used for children aged 4–18 years. MACS spans the entire spectrum of functional limitations found among children with cerebral palsy and covers all sub-diagnoses.

15 · 5. Level I includes children with minor limitations, while children with severe functional limitations will usually be found at levels IV and V. MACS levels are stable over time.

15 · 6. The certifying medical authority needs to know the following to use MACS:

16 · Leprosy Cured Persons with disabilities

16 · 1. Definition- "leprosy cured person" means a person who has been cured of leprosy but is suffering from-

16 · 2. WHO grading of disability in Leprosy:

16 · 3. For sensory testing of hands and feet, light touch (just enough to indent the skin very slightly) of the tip of ball point pen is recommended.

16 · 4. For testing loss of corneal sensation, light touch of the clean cotton wisp from the lateral side is recommended. It is also to be noted whether blinking of the eyes is normal or not.

16 · 5. Muscle power is tested clinically by Voluntary Muscle testing of commonly examined peripheral nerves and graded as per the Medical Research Council, London Scale.

16 · 6. In a leprosy cured person with involvement of dominant upper extremity (mostly right hand), additional 10% weightage is to be given. Total permanent physical impairment/disability % will not exceed 100%. In a leprosy cured

17 · Guidelines for Evaluation of PPI in cases of Short Stature/Dwarfism:

17 · 1. Definition.- "Dwarfism" means a medical or genetic condition resulting in an adult height of 4 feet 10 inches (147 centimeters) or less.

17 · 2. The evaluation of a short statured person shall be considered irrespective of whether it is of proportionate variety or disproportionate variety and is accompanied by an underlying pathological conditions,

18 · Muscular Dystrophy

18 · 1. Definition.- "muscular dystrophy" means a group of hereditary genetic muscle disease that weakens the muscles that move the human body and persons with multiple dystrophy have incorrect and missing information in their genes, which prevents them from making the proteins they need for healthy muscles. It is characterised by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue.

18 · 2. After detailed clinical examination, each of the features namely, weakness, contractures, scoliosis, cardiac or pulmonary involvement are evaluated and disability is computed based on the criteria for each of these and added to the locomotor disability component, using the combining formula: a + b (90-a)/ 90 (a = higher value, b = lower value). Disability is to be expressed in relation to the whole body. Total % of disability will not exceed 100%. Due to progressive nature of this disease, review may be necessary after a period, such as 2 years or as desired by the patient or as decided by the disability board.

18 · 3 Medical Authority and instruments required for certification of locomotor disability

18 · 3.1 The Medical Superintendent or Chief Medical Officer or Civil Surgeon or any other equivalent authority as notified by the State Government shall be the head of the certification board for the purpose of certification of locomotor disability including cerebral palsy, leprosy cured, dwarfism, acid attack victims and muscular dystrophy. The Board shall comprise of:

18 · 3. 2. The most important resource is the knowledge and skill of the Members/Experts involved in the process . However, a few items listed below may also be required:

19 · 1. Definition.- Visual impairment

19 · 2. Nature of Certificate: The medical authority will decide whether disability certificate should be temporary or permanent. The disability shall be permanent to be certified. The certificate can be temporary if condition is likely to worsen and also for specific purposes such as for pursuing education. The need of reassessment, if required, should be clearly mentioned in the certificate with time frame. In certain cases such as keratoconus, developmental defects, operated congenital cataract with corneal decompensation, operated congenital glaucoma with hazy cornea etc., the patient especially can be issued a temporary certificate.

19 · 3. Visual Impairment Certification Criteria and Gradation

19 · 4. Medical Authority.

20 · 1. Definition:

20 · 2. Guidelines for Assessment:

20 · 2.1. Measurement Air Conduction Thresholds (ACT):

20 · 2.2 . Computation of Percentage of Hearing Disability:

0 · to 25 0 61 41.71

26 · 1 62 43.42

27 · 1 63 45.13

28 · 1 64 46.84

29 · 1 65 48.55

30 · 1 66 50.26

31 · 1 67 51.97

32 · 1 68 53.68

33 · 1 69 55.39

34 · 2 70 57.1

35 · 3 71 58.81

36 · 4 72 60.52

37 · 5 73 62.23

38 · 6 74 63.94

39 · 7 75 65.65

40 · 8 76 67.36

41 · 9 77 69.07

42 · 10 78 70.78

43 · 11 79 72.49

44 · 12 80 74.2

45 · 13 81 75.91

46 · 14 82 77.62

47 · 15 83 79.33

48 · 16 84 81.04

49 · 17 85 82.75

50 · 18 86 84.46

51 · 19 87 86.17

52 · 20 88 87.88

53 · 21 89 89.59

54 · 22 90 91.3

55 · 23 91 93.01

56 · 24 92 94.72

57 · 25 93 96.43

58 · 26 94 98.14

59 · 27 95 100

20 · 2.3. Percentage of Hearing Disability

20 · 3.1. Definition: "Speech and language disability" means a permanent disability arising out of conditions such as laryngectomy or aphasia affecting one or more components of speech and language due to organic or neurological causes

20 · 3.2. Conditions affecting Speech Components for which Speech Disability certificate can be issued

20 · 3.3. Computation of Percentage Speech Disability

2 · x Upper range of percentage of SIA+ Upper range of percentage of OVCA 3

20 · 4.1. Conditions affecting Language Components for which Language Disability certificate can be issued

20 · 4.2. Language Test

20 · 4.3. Percentage of Language Disability

20 · 4.4. Medical Authority. The Medical Superintendent or Chief Medical Officer or Civil Surgeon or any other equivalent authority as notified by the State Government shall be the head of the certification medical authority for the purpose of certification of hearing disability, and speech and language disability. The certification medical authority shall comprise of:

21 · Intellectual Disability

21 · 1. Definition - Intellectual disability, a condition characterised by significant limitation both in intellectual functioning (rasoning, learning, problem solving) and in adaptive behaviour which covers a range of every day, social and practical skills.

21 · 2. Screening: Many of these children are on follow-up with pediatricians as developmental delay. Hence, they can be assessed by pediatricians and screened for associated co-morbidities, viz. hearing/ vision/ locomotor impairments/ epilepsy. Then these children are referred for detailed assessment. (See Figure 1)

21 · 3. Diagnosis: The screened children will be referred to Child/ clinical psychologists for Adaptive functioning and IQ testing. The tools that can be used for the same include:

21 · 4. Disability calculation: The disability calculation will be done based on VSMS score. The following will be used for disability calculation:

21 · 5. Age for certification: The minimum age for certification will be one (01) completed year. Children above one year and up to the age of 5 years shall be given a diagnosis as Global Developmental Delay (GDD). Children above the age of 5 years shall be given a diagnosis and certificate as Intellectual Disability.

21 · 6. Medical Authority: The Medical Superintendent or Chief Medical Officer or Civil Surgeon or any other equivalent authority as notified by the State Government shall be the head of the Medical Board. The Authority shall comprise of:

21 · 7. Validity of Certificate:

22 · Specific Learning Disability (SLD):

22 · 1. Definition.- "specific learning disabilities" means a heterogeneous group of conditions wherein there is a deficit in processing language, spoken or written, that may manifest itself as a difficulty to comprehend, speak, read, write, spell, or to do mathematical calculations and includes such conditions as perceptual disabilities, dyslexia, dysgraphia, dyscalculia, dyspraxia and developmental aphasia;

22 · 2. Screening.-

22 · 3. Diagnosis: The diagnosis will require a team approach involving a pediatrician and clinical or rehabilitation psychologist. This would involve three steps:

22 · 4. Diagnostic Tool - National Institute for Mental Health and Neurosciences (NIMHANS) battery shall be applied for diagnostic test for SLD.

22 · 5. Medical Authority: The Medical Superintendent or Chief Medical Officer or Civil Surgeon or any other equivalent authority as notified by the State Government shall be head the certification authority. The medical authority will comprise of:

22 · 6. Validity of Certificate: The certification will be done for children aged eight years and above only. The child will have to undergo repeat certification at the age of 14 years and at the age of 18 years. The certificate issued at 18 years will be valid life-long.

23 · 1. Definition: "mental illness" means a substantial disorder of thinking, mood, perception, orientation or memory that grossly impairs judgment, behaviour, capacity to recognise reality or ability to meet the ordinary demands of life, but does not include retardation which is a condition of arrested or incomplete development of mind of a person, specially characterised by subnormality of intelligence.

23 · 2. The examination process will consist of components as required namely, clinical assessment, IDEAS scale and/or IQ assessment.

23 · 3. Indian Disability Evaluation and Assessment Scale (IDEAS) administration (see Appendix IV) is to be used for mental illness.

23 · 4. In some cases where there is suspicion of intellectual deficits or additional intellectual evaluation is required for any reason, Standardised IQ test may be carried out. Categories on IQ score will be:

23 · 5. In cases where the mental behavioural condition requires only IDEAS, then only IDEAS can be administered and degree of disability certified.

23 · 6. In cases where the mental behavioural condition requires only IQ, then a standardised IQ test shall be used to certify degree of disability.

23 · 7. In some cases, only one test may not estimate disability comprehensively. Such a person may have borderline or normal score on one test with disability score on the other. In such cases both IQ and IDEAS shall be used, the score indicating more severe disability should be the degree of disability for that person.

25 · 1. Definition:

25 · 2. The disability caused due to chronic neurological conditions such as multiple sclerosis, parkinsons disease is multi dimensional involving manifestation in muscular skeleton system and also psycho social behaviour. The disability in musculo-skeletal system on account of these conditions shall be assessed in terms of Section E (para 10-10.8 of Annexure II) of these guidelines relating to assessment of locomotor disability due to chronic neurological conditions and the psychosocial disability (mental illness) shall be assessed by using the IDEAS as at Appendix IV. Comprehensive disability on account of these conditions shall then be calculated by using the formula a + b (90-a).

25 · 3. Neurological conditions which are reversible and without sequel are not certifiable. Only neurological conditions which are permanent are certifiable. Permanent disability certificate can be issued in irreversible/progressive cases. If needed in specific cases, a re-evaluation of disability can be done after a period of one year.

25 · 4. The disability certificate shall mention Chronic Neurological Conditions (name of disease).

25 · 5. Medical Authority: The Medical Superintendent or Chief Medical Officer or Civil Surgeon or any other equivalent authority as notified by the State Government shall be the head of the certification authority with the following two other members:-

25 · 6. Standardized IQ test may be carried out if required. Categories on IQ score will be:

25 · 7. In cases where the chronic neurological condition requires only IDEAS, then only IDEAS can be administered and degree of disability certified.

25 · 8. In cases where the chronic neurological condition requires only IQ, then a standardized IQ test should be used to certify degree of disability.

25 · 9. In some cases, only one test may not estimate disability comprehensively. Such a person may have borderline score on one test with marked disability score on the other. In such cases both IQ and IDEAS shall be used. The score indicating more severe disability shall be the degree of disability for that person.

26 · 1. Definition.- Blood disorder in relation to —

26 · 2. Type of disability certificate - The process of evaluation shall be dynamic and to be reviewed periodically at least one year interval, as these diseases are progressive in nature. However, in patients with severe disability with score above 80%, permanent certificate shall be issued subject to proof of survival.

26 · 3. Medical Authority – Medical Authority for certification and evaluation of disability due to blood disorder shall comprise of the following:-

27 · Sickle Cell Disease

27 · 1. The clinical syndromes resulting from disorders of hemoglobin synthesis are referred to as hemoglobinopathies. They are grouped in three main categories:

27 · 2. Individual can have a combination of two or more of these abnormalities.

28 · STRUCTURE VARIANTS:

28 · 1. Alteration in the structure of hemoglobin are usually brought about by point mutations affecting one or in some cases two or more bases coding for amino acids of the globin chains. In HbS such a point mutation is caused by the substitution of valine for glutamic acid in position 6 of β globin chain.

28 · 2. Hemoglobin variants of clinical significance or genetic significance (e.g. Hbs S, C, D punjab , E and O arab ) are readily detectable by electrophoretic and chromatographic techniques.

29 · Hb S

29 · 1. The term "sickle cell disease" (SCD) encompasses both homozygous and the compound heterozygous states that lead to the symptomatic disease as a result of formation of sickle cell red cell, due to presence of Hb S.

29 · 2. The homozygous state or sickle cell anemia cause both haemolysis and also reduced oxygen affinity of HbS. Sickle cell anemias refers to specifically to those Individuals having homozygous for the sickle cell disease (HbSS), compound heterozygous (HbS/β 0 ) thalassaemia.

29 · 3. The main clinical disability arises from repeated episodes of vaso- occlusive events (called painful crisis), organ dysfunction, impairment of vision, hearing, anemia, bone disease, pulmonary complications, skin ulcerations, gall bladder stones and psychological problems.

29 · 4. Main problem occurs because of easy deformability of RBC under stress (sickling), hypoxia or infection, and RBC becomes SICKLE SHAPE hence this name.

29 · 5. The clinical severity of sickle cell anemia is extremely variable. It is partly due to the modifying factors such as interaction with α Thalassemia or synthesis of HbF and partly to socioeconomic conditions and other factors that influence general health.

29 · 6. Sickle cell trait (β genotype AS), heterozygous state, is not associated with hematological abnormalities. In this group sickling occurs at very high altitude and low oxygen pressure.

30 · Other forms of sickle cell disease

31 · Detection and Diagnosis of Hemoglobinopathies: - (see Appendix V)

32 · 1. Clinical Presentation

32 · 2. Fever

32 · 3. Pain

32 · 4. Acute chest syndrome (ACS)

32 · 5. Strokes and transient ischemic attacks (TIAs)

33 · Other complications:

34 · 1. Indications for allogeneic Hematopoietic stem cell transplant (HSCT) for sickle cell disease:

34 · 2. Transfusions are needed in only special indications. If transfusions needed, then a pre transfusion extended red cell typing is required [Rh Sub group (Cc, Ee), Kell, Kidd, S/s] as these patients frequently develop delayed Hemolytic Transfusion Reaction (30% cases) and allo- immunization. Children receiving regular transfusions will need to have serum ferritin monitoring and chelation therapy.

34 · 3. The aim of transfusions to reduce Hb S levels to below 30 % prevent strokes in children with high central nervous system blood flow [evidence from the Stroke Prevention Trial in Sickle Cell Anemia (STOP I)].

34 · 4. Prevention of complications can be achieved by prescribing Hydroxyurea and judicious use of blood transfusions. Hydroxyurea decreases crises in patients with severe sickle cell disease.

34 · 5. Whereas those with sickle cell trait (HbAS), HbS/β + , or HbSC typically have mild to moderate symptoms.

35 · The international classification of functions disability and health (ICF), distinguishes functional and structural impairments from limitations in personal activities and restriction on social participation. The disability changes over time hence it should be measured longitudinally.

36 · Severity Score

2 · . Above plus Painful crisis due to blood clots in blood vessels at least three times in the past five months (vasoocclusive crisis or thrombotic crisis).

4 · Above plus Functional impairment caused by sickle cells that meet another disability listing due to avascular necrosis, osteomyelitis, and bone infarction of multiple joints, stroke and transient Ischemic Attack (TIA), leg ulcers. –should be referred to multidisability board

37 · Thalassemia

37 · 1. Thalassaemia refers to group of blood diseases characterized by decreased or absent synthesis of globin chains. Most thalassaemia are inherited as recessive traits. From clinical point of view most relevant types are α and β thalassaemias. Currently based on their clinical severity and transfusion requirement, these thalassaemia syndromes can be classified phenotypically into two main groups; transfusion dependent thalassaemias (TDTs) and Non-transfusion dependent thalassaemias (NTDTs).

37 · 2. Screening is based on estimation of Hemoglobin (Hb) by digital Hemoglobinometer and NESTROFT (Naked eye single tube osmatic fragility test) as the primary screening test, followed by Complete Blood Counts (CBC) and HPLC test, for the screen positive cases. Serum Ferritin is done in required cases to confirm concomitant iron deficiency anemia in suspected thalassemia carriers.

37 · 3. The guiding elements of National Health Mission (NHM) Guidelines on Hemoglobinopathies are-

37 · 4. DETECTION AND DIAGNOSIS OF Thalassemia-Appendix VI

37 · 5. COMPLICATIONS OF IRON OVERLOAD, MULTIPLE TRANSFUSION AND INDICATIONS OF SPLENECTOMY

38 · Scoring system for assessment of disability

38 · 1. DISABILITY GRADING

38 · 2. In nutshell- when diagnosis of Thalassemia major confirmed by appropriate clinical examination and laboratory tests as specified above and has progressive pallor with Hb persistently low ie <7gm% and have failure to thrive and require regular BT to maintain Hb above 10 shall be entry point for disability eligibility and with passage of time, as and when new complications develops disability shall be reassessed as mentioned above and higher score should be awarded.

39 · Haemophilia

39 · 1. What is Haemophilia:

39 · 2. Bleeding manifestations

39 · 3. Eligibility for certification

39 · 4. Confirmation of diagnosis individual factor assay from recognized laboratory shall be made available (Appendix VII)

39 · 5. Disability grading shall be as follows:-

40 · Multiple Disabilities

40 · 1. Definition: Multiple Disabilities means a combination of two or more disabilities mentioned below:-

40 · 2. Guidelines for Assessment:

40 · 2.1. The guidelines used for every single disability shall be used for assessment of each disability of a person having multiple disability in the first instance.

40 · 2.2. Subsequently, in order to arrive at the total percentage of multiple disabilities, the combining formula a + b (90a), shall be used where 90

40 · 2.3 For certifying more than two disabilities, each disability will be evaluated and the degree of disability will be calculated by the notified Specialists in the area. Based on the score received for each disability, they will be graded from the most severe to the least severe. The formula:

41 · Medical Authority

0 · No Disability = 0%

20 · Profound Disability = l00%

0 · = No disability: Patient's level and pattern of self-care are normal, within the social cultural and economic context.

1 · = Mild: Mild deterioration in self-care and appearance (not bathing, shaving, changing clothes for the occasion as expected). Does not have adverse consequences such as hazards to her/his health. No embarrassment to family.

2 · = Moderate: Lack of concern for self-care should be clearly established such as mild deterioration of physical health, obesity, tooth decay & body odours.

3 · = Severe: Decline in self-care should be marked in all areas. Patient wearing torn clothes would only wash if made to and would only care if told. Evidence of serious hazards to physical health. (Malnutrition, infection, patient unacceptable in public).

4 · = Profound: Total or near total lack of self-care (Example: risk to physical survival, needs feeding, washing, putting on clothes etc., constant supervision necessary)

1 · Questions

0 · = No disability: Patient mixes, talks and generally interacts with people as much as can be expected in her/his socio-cultural context. No evidence of avoiding people.