Centers of Independent Living for People with Lifelong Disabilities in Portugal

Ignacio Martín, Joaquim Alvarelhão and Vanessa Póvoa

Introduction


Ignacio Martín, Joaquim Alvarelhão and Vanessa Póvoa

Introduction

The current cohort of older people with lifelong disabilities is the first group of its size to have survived into later life (Bigby, 2002). This is a relatively new phenomenon which is challenging policy and service systems alike (Bigby, 2004). Service and policy systems are faced with the challenge of providing the day-to-day support that was previously provided by parents (who have since become impaired or have died themselves) and this generally occurs when disabled adults enter middle age (idem).

Institutionalization frequently occurs as a consequence of this loss of familiar or social support. A study conducted by Emerson et al (2001, cit. in Bigby, 2004) showed that the ratio of people with intellectual disabilities living in the community to those living in assisted living facilities shifts from 70:30 in the 20 to 24 age group to 30:70 in the over-55 age group.

The goal of this paper is to analyze both the demand for Centers of Independent Living for older adults with lifelong disabilities in Portugal and the response of the policy makers to meet this demand. The underlying principle is that the increase in demand is the predominant consequence of this aging of people with lifelong disabilities.

The form and context of the phenomena

The World Health Organization (WHO) has compiled statistical data about the prevalence of disability (%) by country (WHO, 2011), which confirm that Portugal's statistical data is similar to that of other European countries. An estimate 11.2% of Portugal's total population in 2002 suffered from disability (WHO, 2011).

The Portugal 2001 Census classified disabled people by type of deficit in hearing loss, visual loss, motor impairment, health mental problems, cerebral palsy, and other impairments. After that the average age was calculated for each group (Gonçalves, 2003). The data is shown in the following table (see Table 1).

Table 1. Scenario of disabled people in Portugal

Total Population

Hearing Loss

Visual Loss

Motor Impairment

Mental Health Problems

Cerebral Palsy

Other impairment

%

-

13.2%

25.7%

24.6%

11.2%

2.4%

23%

Average Age

39.5 years

57.6 years

49.1 years

58.5 years

44.3 years

43.6 years

52.6 years

The average age of the general Portuguese population is 39.5, which is lower than the average age of disabled people. Additionally, the aging of people with all types of disabilities is evident (Gonçalves, 2003), including those suffering from Cerebral Palsy, which is usually triggered at an earlier age (see Table 1).

In fact, the aging process of people with lifelong disability produces challenges such as accommodation. This phenomenon is referred to as a “housing time bomb”, because adults with lifelong disabilities are being cared for at home, by a growing population of elderly parents who are getting older and frailer (MEDCAP, 2002).

Centers for Independent Living in Portugal

The accommodation support services for older people with lifelong disabilities include services that provide the support needed to enable a disabled person to remain in their existing accommodation (Bigby, 2004). In Portugal, the accommodation support services for disabled people are subject to tight legal regulations which admit only one category of accommodation support services called Centers for Independent Living.

The Centers for Independent Living are regulated by Regulatory Orders no. 28/2006 (Portuguese Republic Diary, 28/2006) published on May 03rd, 2006, and its supervisory agency is the Social Security (a subordinate body of the Ministry of Labor and Social Security). Users of Centers for Independent Living have to be over 16 and must meet certain requirements such as (a) their place of residence must be incompatible with educational programs or training, (b) their relatives are not able to help or support them, (c) their primary caregivers are in need of temporary relief. The Centers for Independent Living can also host younger people in extraordinary situations, such as when other social programs or family support have been proved impossible (Portuguese Republic Diary, 28/2006).

In Centers for Independent Living 24-hour resident support must be available. There are minimum standards that human resources need to meet. It’s mandatory to have one Unlicensed Assistive Personnel member for every 2 users, one Health Cleaning Professional for every 6 users, as well as an administrator and one psychologist or Occupational Therapist (Portuguese Republic Diary, 28/2006).

There are 197 Centers for Independent Living in Portugal (Social Charter, 2011), comprising a total of 4,537 vacancies.

The demand for Centers for Independent Living has been reinforced by local studies, (CLANS Paços de Ferreira, 2009), and there are Centers for Independent Living with waiting lists of over 200 people (Capucha et al., 2004). Furthermore, it is apparent that people with permanent disabilities are inappropriately placed in aged care facilities, such as Day Care Centers where 3% to 7% of users are not elders but rather people with permanent developmental delays (Teixeira, 2006).

There is currently in Portugal a considerably high demand for Centers for Independent Living among people with lifelong disabilities. The occupancy rates are as high as 94.2% (Social Chapter, 2008), even though there was an increase of 73% in placements in facilities between 1998 and 2005 (Social Chapter, 2008).

The challenges for Agencies for People with Disabilities

The development and management of Centers for Independent Living is exclusively performed by agencies from the non-profit sector. Social Security is currently responsible for overseeing the creation of these centers and for developing programs for disabled people (e.g., Centers for Independent Living); This is achieved via two different means of funding - the Ordinary Protocols and the PARES Project.

The Ordinary Protocols guarantee a monthly disbursement per person, but there is a previously agreed maximum number of people per agency. The PARES project pays up to 75% of the building cost of residential units while the remainder is provided by the agency for disabled people. Moreover, the PARES project guarantees that the created beds are also co-financed by Social Security through Ordinary Protocols.

The ultimate goal of agencies working for disabled people is to create more Centers for Independent Living to deal with the specific needs of those living with lifelong disabilities. If you want to understand the problem, the next data could be analysed. Table 2 below outlines the funding per bed by Ordinary Protocols and PARES project and the costs by year.

Table 2. Annual cost per bed funded by Social Security

Income (Euros)

Costs (Euros)

Estimated Costs (Porto Assoc of Cerebral Palsy, 2010)

18.000

Public Funding by Social Security (Social Security, 2008)

Ordinary Protocols

10.847

PARES Project

994

Total Public Funding

11.841

Cost per bed without coverage by public funding

6.160

An analysis of the data of Table 2 reveals the annual mean cost per bed in social organizations for disability people. In 2010, the estimated cost in a reference organization rounded 18.000 euros. Nevertheless, the public sector, represented by Social Security, financing 11.840,8 euros for each disabled person. This amount result of two different means of funding: the Ordinary Protocols (10.847,3 €) and the PARES Project (993,5 €). In most cases the remainder to be financed comes of the person with disability that fills the vacancy (6.160 €).

The problem of not creating enough Centers for Independent Living is that the agencies have not enough money to build the Centers for Independent Living and so depend on Social Security by PARES project to finance construction. The dilemma for Social Security is that by financing the building of the agency, it would also have to provide continual funding at a high financial cost (co-financing 10.847,3 € per year). And to close, as the legal framework considers only Centers for Independent Living with high standards of care, that funding it may not be high enough because the disability people is mainly poor. By this way, the number of required beds to meet demand will never be attained.

Solution to the problem

The strategy to solve the problem of the growing demand can be achieved by increasing the flexibility of the supply of accommodation support services, which is currently rigid. First of all, legislative change is required to allow building other categories of residential accommodation in order to make the range of the available offer more flexible. There are categories that need to be defined in legal terms, so as to create accommodation resources for disabled people with lower incapacity levels. Hostel and Group Homes are categories of accommodation which don’t yet exist in Portugal. Hostel is defined as the residential support in a congregate setting of usually less that 20 beds, and may or may not provide 24-hour residential support. Group Homes provide combined accommodation and community-based residential support to people in a residential setting; usually each house does not accommodate more than 6 people, although this can vary (Australian Institute of Health and Welfare, 2004).

Simultaneously, it could change the method of financing, in which funds are attributed directly to each individual, to improve on the current model that involves public funds managed by agencies. This method of funding would hold the disabled people for the choice of accommodation, encouraged them more to meet the deficit between public funding and the real cost. Above all, this is important when the funding by the disabled people could be up to one third of the real cost of the equipment (see Table 2).

Social Security could revoke the contractual obligation of funding for the creation of beds via the PARES Project with Ordinary Protocols. This contractual obligation disclaims the agencies because it guarantees a double funding (to building and current costs of all disabled people). Instead, the financing of construction must be the responsibility of agencies. Besides others the cost of edification is not so high compared to current costs (an approximately 5.5% of the total actual cost).

This shows the importance disabled people want to be able to choose the category of accommodation that they prefer, instead of having it determined by the regulatory system, since the current funding model limits the self-determination of people with disabilities. For disabled people to be able to choose the accommodation according with their needs, the agencies must create a variety and amount of accommodations, and innovate in new types of accommodations and therefore the agencies must have the financial capacity own to not depend of the support of the public funding. But first and foremost, it is necessary that the legislative framework can be relaxed.

References

Bigby, G. (2002). Ageing people with a lifelong disability: Challenges for the aged care and disability sectors. Journal of Intellectual & Developmental Disability, 27(4), p. 231-241.

Bigby, G. (2004). Ageing with a lifelong disability: A guide to practice, program and policy issues for human services professionals. London: Jessica Kingsley Publishers.

Capucha, L., Cabrita, M., Salvado, A., Álvares M., Paulino, A.M., Santos, S. & Mendes, R. (2004). The impact of the European Social Fund on Labor Rehabilitation of disabled people in Portugal. Porto: Center of Labor Rehabilitation of Gaia.

CNIS (2009). Program of Cooperation 2009. Retrieved from URL http://www.solidariedade.pt/UserFiles/PROTOCOLO%20DE%20COOPERACAO%202009.pdf.

Gonçalves, C. (2003). An explanatory analysis on disabled persons and their familiar situation. Journal of Demographic Studies, 33, p. 70-94.

Joint Committee on Human Right (2008). A life like any other? Human rights of adults with learning disabilities: Seventh report of Session 2007-08 in Volume II, HC Paper 40-II, HC 71-II.

MENCAP (2002). The housing time bomb: The housing crisis facing people with a learning disability and their older parents, London, Mencap.

National Secretariat for the Rehabilitation and Integration of Persons with Disabilities (1995). National Inquiry about the incapacities, deficiencies and disadvantages.http://www.inr.pt.

Porto Association of Cerebral Palsy (2010). [Average cost monthly in Centers of Independent Living of Balbom]. Unpublished raw data.

Social Charter (2010). Social Charter - Network Services and Equipment (Report 2008). Retrieved from URL http://www.cartasocial.pt/pdf/csocial2008.pdf.

Social Services Council of Paços de Ferreira (2009). Annual report - 2010. Retrieved from http://www.redesocialpf.com/documentos/Plano%20de%20Ac%C3%A7%C3%A3o%202010.pdf.

Social Security (2008). Phase II - PARES Program Aveiro. Retrieved from URL http://www.gov-civil-aveiro.pt/gca/pares%20ii%20-%20aveiro.pdf

Teixeira, M. (2008). Day care on client perspective: An overview. (Master dissertation. University of Aveiro).

World Health Organization (2011). Report World Disability. Malta: World Health Organization.

Contributors

Ignacio Martín
Assistant Professor, University of Aveiro: Health Department; Member of Unit of Research and Training in Adults and Elders – UnIFai: University of Porto: Institute of Biomedical Sciences Abel Salazar Email: jmartin@ua.pt

URL: http://www.ideg.com.pt | http://www.unifai.eu

Joaquim Alvarelhão
Teaching Assistant, University of Aveiro: School of Health; Member of Cerebral Palsy Association of Porto Email: jalvarelhao@ua.pt

URL: http://www.appc.pt

Vanessa Póvoa
Research Assistant, Unit of Research and Training in Adults and Elders – UnIFai: University of Porto: Institute of Biomedical Sciences Abel Salazar Email: vanessapovoa@ua.pt

URL: www.unifai.eu


 

International Journal of Disability, Community & Rehabilitation
Volume 11, No. 1
www.ijdcr.ca
ISSN 1703-3381