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Advances in Community Inclusion for People with Disabilities
- 1. ADVANCES IN COMMUNITY INCLUSION MRINAL JOSHI DIRECTOR REHABILITATION RESEARCH CENTRE SMS MEDICAL COLLEGE & HOSPITALS JAIPUR IFNR 2022 Special Session-Spinal Injury Rehab
- 2. Definition - Inclusion The practice or policy of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities
- 3. Participation • More strongly related to positive influence on health and well being • More strongly related to quality of life • Highly valued rehabilitation outcome for PWDs • ICF defines Participation as “a person’s involvement in a life situation” and Activity as “the execution of a task or action by an individual” • Participation can be seen as active engagement at the community level International Journal of Rehabilitation Research 2015,38:1-19
- 4. Community Inclusion The opportunity to live and exist as a contributing member of the community while being valued for one’s abilities and uniqueness – regardless of disability. The ultimate goal of community inclusion is participation of people with disabilities in • Employment • Housing • Education • Recreation and leisure • Civic management • Peer support • Ultimate goal of rehabilitation interventions communitymainstreaming.org
- 5. Community reintegration Dijkers defined community integration as “acquiring/resuming age- gender- culture- appropriate roles/ statuses/ activities, including independence/interdependence in decision making, productive behaviours performed as part of multivariate relationships with family, friends, and others in natural community settings. It is a complex biopsychosocial phenomenon. Top Spinal Cord Inj Rehabil 1998;4:1-17
- 6. With inclusion, people • Feel associated • Are acknowledged, accepted and recognized • Feel worthy • Actively participate in community • Have the right to choose their activities • Have the right to choose their social relationships • Have companions and don’t feel left out thebetterindia.com
- 7. Social relationships • Essential component of optimal health & well being • Social people have healthier and longer life • SCIs have negative impact on social relations due to neurological challenges • Married have higher proportions of network members • Married have lower feelings of loneliness • Tetraplegics have lower networking days than paraplegics • No significant association between network size and feeling of loneliness • Employment status was found to protective against loneliness • Reinforces the importance of supporting caregivers Disability And Rehabilitation http://doi.org/10.1080/09638288.2019.1616328
- 8. The Problem • Low inclusion incidence with PWDs • Meagre 0.14% of PWDs in India have regular jobs • PWDs not chosen by potential employers • In rural area dependent on non-agriculture-based self employment • Unsustainable financial situation • Contributing factors • Low education • Inability to afford health treatment • Un-inclusive employment settings • Un-inclusive surroundings • Prejudice against PWDs centerforfinancialinclusion.org
- 9. Factors influencing participation • Medical model of disability • Self efficacy & adjustment skills • Physical health & functional capacities • Availability of cost-effective adaptive equipment • Relearning capacities for performing daily activities • Social model of disability • Impact of natural & physical environments • Social relations based on social skills and mutual understanding • Human rights model of disability • Autonomy in daily occupation • Justice through application of policies, advocacy & negotiation Top Spinal Cord Inj Rehabil doi: 10.13110/sci2501-41 Australian Occupational Therapy Journal doi:10.1111/1440-1630.12241
- 10. Employment • Key indicator of successful rehabilitation and community integration • Europe 43-61.4% employment rate in SCI • U.S. 49% • Australia 42% • Indonesia, Thailand & Malaysia 36.3%-44.7% • China 23-31% • South Korea 27% • Japan 50.5% Archives of Physical Medicine & Rehabilitation http://doi.org/10.1016/j.apmr.2020.05.027
- 11. Solutions • Client centred rehabilitation & promoting physical activity • Disability friendly environment through local cooperation • Urgent need to address social justice and empowerment • Community based mentoring • “Halfway houses” Top Spinal Cord Inj Rehabil doi: 10.13110/sci2501-41 NeuroRehabilitation doi: 10.32233/NRE-22012-0775 BMC Health Service Research doi: 10.1186/s12913-020-051181-x
- 12. South India experience Arch Phys Med Rehabil Vol 91, July 2010 Spinal Cord Series & Cases (2021)7:32
- 13. Predicting community reintegration • Increasingly important area of clinical, policy and research interest • Facilitators • SCI with less severe neurologic injuries • Caucasian ethnicity • Higher education • Female , higher occupational community integration but lower in other domains • Longer post-injury period • Strong social support • Impediments • Severe neurologic injuries • Lower educational level • Minority status • Shorter duration of injury • Unmarried status Arch Phys Med Rehabil 1999;80:1485-91
- 14. Life care plan • Medical rehabilitation problem list & current status • Recommendations/interventions, including projected evaluations by physicians, therapists, psychology services, vocational and recreational therapies and case management. Projected therapeutic interventions (frequency, duration & type) and diagnostic testing requirement should be included. • Ongoing medical needs, including medications, home care assistance, projected medical & surgical needs and disposable medical supplies. • Housing & architectural adaptations for accessibility. • Equipment needs, including home equipment, exercise equipment, driving & transportation needs, orthotics, wheelchair needs and recreational equipment. Arch Phys Med Rehabil Vol 88, Suppl 1, March 2007
- 15. Life care plan • Recommendations for preventive actions and interventions to decrease the frequency, severity and duration of complications. • Estimated length of each required service. • Estimated costs for each required service. • Estimated life expectancy. Arch Phys Med Rehabil Vol 88, Suppl 1, March 2007
Editor's Notes
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- Participation in meaningful occupations has been shown to have a positive influence on health and well-being, and is a vital part of the human condition and experience . It is internationally recognized that all individuals, including those with disabilities, have a right to be able to fully participate in society. Participation has been shown to more strongly related to quality of life than either impairment or func-tional ability and is therefore a highly valued rehabilitation outcome for individuals with dis-abilities. The ICF describes the impact of health conditions on individuals' lives and places functioning and disability in a context that includes both environmental and personal factors. ICF defines Participation as ‘a person's involvement in a life situation' and Activity is defined as ‘the execution of a task or action by an individual. Participation can be seen as including active engagement at the community level and a means to experience social connectedness with other individuals and communities
- Dijkers6 has eloquently defined community reintegration as “acquiring/ resuming age- gender- culture-appro-priate roles/ statuses/activities, including independence/interde-pendence in decision making, and productive behaviors per-formed as part of multivaried relationships with family, friends, and others in natural community settings.”6(p5) Thus, community reintegration is a complex phenomenon influenced by various biopsychosocial factors.
- Social relationships are essential component of optimal health and well being. Adults who have more relationships are healthier with longer life expectancy than those in the general population with less social relationships. For spinal injured, social relations may be negatively impacted due to challenges of neurological impairments as well as the environmental barriers to social participation. There is paucity of research specifically examining social disconnectedness & perceived social isolation. In a study conducted in Greece by Tzonichaki, greater feelings of loneliness were associated with lower life satisfaction and self esteem. Similarly in study conducted by Sara in Canada showed that persons who were married had a higher proportion of network members and had higher average number of days interacting with network members. And had higher proportions of kin as network members. Lower feelings of loneliness were associated with having a higher proportion of network members living in the household. So bigger the family merrier you are. Guilcher found social networks of persons with SCI tended to be robust and of quality, yet smaller than social network observed in general population. One of the finding in these research was that employment status was found to be protective against feelings of loneliness. Employment has been shown to provide a sense of purpose, belongingness, social inclusion and increase social networks. Engaging in meaningful employment has also been associated with physical health, mental health and overall well being. Unfortunately employment rate in people with SCI is almost zero, especially in india.
- Participation in daily activities denotes the ICF domains of self-care (activities of daily living), domestic life (instrumented activities of daily living), interpersonal interaction and relationship (social participation); major life areas (education and work); and community, social and civic life (play and leisure). Addressing the social environmental influences is critically important as many persons with spinal injury face discrimination and other human right barriers that directly impact their long-term survival, their ability to participate in a quality social life, and their opportunities to be involved in income-generating activities. The medical model prescribes that people need to be cured and supported by compensatory devices or medical technologies to enable participation in daily activities. The view in human right model is to promote, protect and ensure the full & equal enjoyment of human rights and fundamental freedoms to promote respect for the inherent dignity of persons with disabilities. Four categories fell under the medical model of disability, (1) Robust self efficacy and adjustment skills were seen as facilitating participation in daily activities (2) Physical health and functional capacities impact participation, the higher and more complete the lesion the more incontinence and secondary health complications lower participation and social interaction. These constraints are more in low and medium income countries like India the long term survival is also limited (3) Adaptive equipment is beneficial in compensating for functional limitations and with our own experience we have found wheelchair independence and ambulation as two independent factors promoting social interaction and inclusion (4) Patient has to adapt and relearn life skills and this adaptation is necessary for participation. Under the social model disability (11) natural and physical environment have an important influence on participation, inaccessibility of infrastructure , neighbourhood distance, and terrain limit participation. Sometimes the family becomes over protective and does not allow participation to environmental influences, (2) Social relationships and strong social network positively affect inclusion. In relation to human rights model of disability (1) Autonomy is facilitated by freedom of choice, reciprocity and equality in decision making, in employment , family and society, (2) legislation and human rights action facilitated participation in daily activities. Recently there has been an increase in disability quota but accessibility to health and rehabilitation still remains a far fetched dream as starting up rehabilitation services and budget allocation to such facilities is still a far fetched dream in our own backyard. Availability of healthcare and govern-ment policies were both placed in the top five barriers to participation. Overall, there was a general lack of satisfaction with health professionals and the rehabilitation process. Respondents felt unprepared for discharge, that poor attitude of health professionals could limit choice and control, and that there was insufficient support from reintegration professionals but in our context there is no agency or person for following up rehabilitation in community and reintegration.
- Employment is a key indicator of successful rehabilitation and community integration of people with disabilities, including spinal injury. Participation in paid work does not only ensure income and economic self-sufficiency, but is also associated with enhanced self-esteem, building social relationships, life satisfaction and longevity. For the society as a whole, successful integration of people with disabilities into the workforce in effect increases work productivity and contributes to the social well being of the population. In most of the countries the employment rate of spinal injures is around 35-37, but no figures are available from India. Lot of factors play a role, such as income per capita, socioeconomic inequality, national labour market and policies, health care systems and policies including financial disincentive/incentive and attitude towards participation of people with disabilities in the labour market. It is sad to see that our National Medical Council is still unclear about the importance of Physical Medicine & Rehabilitation. In absence of rehab & health care how we can ensure or facilitate rehabilitation and participation. The other challenge we have is the educational background in Indian spinal injury population, almost 70% patients are agriculture workers or manual labourers with only primary / middle school education and these characteristics in many studies has been associated with a lower return to work rate.
- We need to have outreach services like telerehab & telemonitoring and there is a dire need to develop affordable and advanced adaptive equipment. Priority should be made to develop strong social network and sensitising members of family & public about the importance and possibility of participation. This would assist in creating conditions to allow persons with spinal injury to reintegrate into community life and to support health and long term survival. There is a urgent need to address social justice and empowerment, I find it surprising that when medical facilities are being set up the social justice department is not included as one of the stake holder resulting in unhelping health facility creation for the challenged people. And despite governmental disability rights policies having been revised recently, there is lack of meaningful advances in equal opportunities in community life. With the advent of managed care and increasing external pressures on the rehabilitation system, the inpatient treatment team is required to focus on those skills and abilities that will allow the individual to return to living in the community. Working on goals aimed at maximizing re-integration and full participation in society have necessarily transitioned away from the inpatient rehabilitation realm to alternative settings such as outpatient, day treatment, and community service pro-grams. Individuals with disabilities in the fields of education and vocational rehabilitation, educational and employment outcomes for individuals with disabilities still lag behind those for non-disabled youth and adults. In particular, youth with disabilities have been one of the most disadvantaged groups subject to discrimination and lack of opportunities. There is clearly an ongoing need for the education and vocational rehabilitation systems to work together to improve outcomes for youth and young adults with disabilities. In 2009, the China Association of Persons with Physical Disability, a government-supported national organization, started community co-op centres called “halfway houses” for individuals with SCI in four provinces. Halfway houses are the platform for community-based rehabilitation (CBR) for individuals with SCI. results suggest that such training is an effective intervention to improve abilities in basic life skills and their applications in family and social life, even for individuals with a long SCI history [7]. Wheelchair use, housework, toileting, and bath transfer were the four items that showed relatively the most improvement.
- Here the study population lives in rural areas where the primary economic activity is daily wage labour. Often the person with SCI was the sole breadwinner in the family. Although many participants had 5 or more years of formal education, only around 40% achieved higher education, compounding the challenge for economic self-sufficiency. Government programs and policies for persons with disability are not enforceable. Thus, despite the proportion of those returning to work being 83.7%, their economic self-sufficiency CHART scores remained relatively low. Many of them did not return to their previous work because of various limitations, both personal , legislative and environmental factors. Therefore, 73% of them adopted their own business. The results suggest that a comprehensive rehabilitation and vocational program, which emphasizes RTW as the ultimate goal, can improve employment status post injury and community reintegration as well as inclusion.
- The World Health Organization's (WHO) Model of Disablement and the Institute of Medicine's (IOM) Model of the Enabling-Disabling Process suggest that the degree to which a person with disability is an active, productive member of society, well integrated into family and community life, is a complex phenomenon influenced by many factors. In general, the relationships found in this study support the premise that survivors of SCI with less severe neurologic injuries, of younger age, of Caucasian ethnicity, and more education will achieve greater community integration. Gender had the smallest effect of the selected variables; being female was associated with higher occupational community reintegration, but lower community reintegration in the other dimensions. (This may be an indication that females are more likely to return to homemaking roles, while males are less likely to return to salaried employment.) it is also found that lower educational levels, minority status, shorter duration of injury, and unmarried status all increased the probability of having incomplete economic self-sufficiency data.