Nursing Aspects of Services for Persons with Intellectual Disability in Israel

Joav Merrick, MD, DMSc, Hilmi Arda, RN, BA, MA and Isack Kandel, MA, PhD

Abstract

This review gives the history of the development of services for persons with intellectual disability (ID) in Israel with a focus on nursing care. Today in Israel with a total population of over 6 million persons the Division for Mental retardation (DMR) is in contact with 23,000 persons of all ages. Residential care is provided to 6,000 persons in 57 institutions all over the country; another 2,000 persons are provided residential care in hostels or protected apartments in the community; with the other 15,000 persons served with day-care kindergarten, day-treatment centers, sheltered workshops or integrated care in the community. The work is illustrated with data of the health profile, morbidity and mortality of the residents. The review concludes with some wishes and dreams for the future. We would like to see the future development in Israel in a direction of a combination of both community care and institutional care for the population of persons with ID.

Keywords:

INTRODUCTION

The first school for children with intellectual disability (ID) was opened in Tel Aviv in 1929. The first residential care center or boarding school for children with ID was established in 1931 in Jerusalem and the first center for assessment of children with ID was established in Tel Aviv in 1936. The second residential care center, also established on a private initiative, was opened in Herzliya in 1945¹.

At the time that the modern State of Israel was established in 1948, there were a total of four residential care centers for 150 children with ID and 25 special education classes with 350 students¹.

HISTORY OF THE DEVELOPMENT OF SERVICES

The history of the development of services has been reviewed and the changes divided into different time periods: 1948-61, 1962-1976, 1977-1985 and 1986-1994¹.

The 1948-61 period started with the Ministry of Education establishing a separate department for special education in 1950 with about 400 children registered. Official records from 1957 showed there were 22 classes with 252 children with moderate ID, and 276 classes with 5,284 children with mild ID. In 1951 the Israeli Parent Association for children with ID (called AKIM) was established in Tel Aviv as a response to the quality of service provided. Today they have 51 branches with a variety of services: nurseries and kindergartens, support for families, respite care centers, hostels and apartments, community centers, employment programs, summer camps, Special Olympics and other sport programs, arts activities and guardianship. These activities are mainly funded by the Government, but AKIM also is supported by donations and fund-raising activities.

In this period welfare services for children with ID at the Ministry of Welfare were provided through the Child, Adolescent and Youth Protection Services, while practically no adult services were in place. Residential care was provided by government (695 persons registered in 1962) or private institutions (469 persons registered in 1962). The first sheltered workshop was opened in Jerusalem in 1955 by AKIM. We have no information on nursing care for this period.

The 1962-1977 period saw the establishment of a separate Service for persons with Mental Retardation in 1962¹. Now all the services for both children and adults were gathered under one roof. This process was not easy for political reasons, but both internal and external pressure helped this reorganization that coincided with the efforts of the John F Kennedy administration in the United States to focus on mental retardation. The policy trend in the United States influenced parents, professionals, administrators and politicians in Israel to establish better standards for residential care. The Ministry formulated standards and criteria for placement, and three assessment centers (for both children and adults) were also opened in Jerusalem, Haifa and Tel Aviv. Kindergartens, day care centers and sheltered workshops for adults were established throughout the country. In 1965 the “Residential Care Center Law” was passed in the Israeli Parliament to regulate supervision. I1969 the “Welfare Law for Persons with ID” came into effect. Training of care staff in residential care centers and community settings (hostels) was established in 1968 when the first certificate course was opened.

The 1977-1985 period¹ began with the Ministry of Welfare merged with the Ministry of Labour in 1977 to be named the Ministry of Labour and Social Affairs (MoLSA). Reflecting the increasingly important role of governmental support of individuals with ID, the Service for persons with Mental Retardation was given its own administration, personnel, and budget in 1978, becoming the Division for Mental Retardation (DMR).

In 1977, the “father” of normalization and de-institutionalization, Niels Erik Bank-Mikkelsen from Denmark, came to Israel to explain his ideas, and to visit facilities for persons with ID. His report on the situation in Israel for persons with ID with his recommendations, together with reports from the parent advocacy organization AKIM, resulted in a period of reorganization and improvement of services. Rather than focus solely on residential care, the DMR worked on a clear definition of the target population to serve. Services in the community were adopted, and supervision of residential care was improved. Because treatment and care were not up to the standard of the Ministry, several facilities were closed. Concern for the legal and social responsibilities of individuals with ID lead to the need to formulate a clear policy concerning criminal acts carried out by persons with ID. Mandatory education was introduced for children with ID due to pressure from parents that children with ID also needed education. Laws were passed concerning guardianship, disability allowance, marriage and payment for productive employment. A campaign to educate the Israeli public on mental retardation and intellectual disability was also put in effect.

During this period several universities became interested in the field of intellectual disability, although nursing and medicine demonstrated little interest in the study of ID. Scholars and clinicians from the fields of psychology and social work accomplished early work in the field of ID, and several masters and doctoral dissertations were published¹.

The 1986-1994 period¹ could be characterized as a period of development and expansion. The DMR now felt responsible for all persons with ID from infancy to old age. The DMR also started to work with parents and families in a partnership. In 1993, toward the end of this period, a new Minister secured more resources to the DMR from the Minister of Finance, which resulted in several changes. The waiting list for residential care was abolished due to the opening of more centers, community services were expanded, and parents were encouraged, through financial incentives, to keep their children at home as long as possible.

Israel does not have home visitation or a home health care nursing infrastructure, which we believe would be of tremendous value to parents, but to date have not found the political power to establish this. More power and responsibility were given to municipalities to have authority for community housing and placement, as a general trend of de-centralization and local responsibility.

THE DIVISION FOR MENTAL RETARDATION IN RECENT YEARS

Today in Israel, with a total population of over 6 million persons, the DMR is in contact with close to 23,000 persons of all ages. Residential care is provided to about 6,000 persons in 57 institutions all over the country. Another 2,000 persons are provided residential care in hostels or protected apartments in the community in about another 50 locations. The remaining 15,000 persons living at home are served with day-care kindergarten, treatment centers, sheltered workshops or integrated care in the community.

The age distribution of 6,370 persons with ID in residential care centers from 2001 is presented in Table 1. Level of intellectual disability in residential care centers in Israel is seen in Table 2². There were nine government, 33 private and 12 public (non-for-profit) centers with a mean of 117.96 persons in each institution (range 25-398). The government funds all residential care centers in Israel and is responsible for all placements of clients. Private and non-profit centers function with independent administrations, while government employees staff government-run facilities. The total expenditure of the DMR today is close to 200 million dollars per year³. Mortality in residential care has recently been studied and published elsewhere⁴.

In Table 3 both community and residential care service is compared for the years 1990 and 1999. Here an increase in the number of persons served can be seen, as well as the number of new services implemented over that period.

Table 1: The population of persons with intellectual disability in residential care centers (institutions) in Israel 2001². Mean 117.96 (range 25-398) per center.

Age in years	Males	Females	Total	Percent
0-9	101	86	187	2.93
10-19	502	379	881	13.83
20-39	1,635	1,130	2,765	43.41
40-49	732	652	1,384	21.73
50-59	419	423	842	13.22
> 60	147	164	311	4.88
Total	3,536	2,834	6,370	100.00
Percent	55.51	44.49	100.00

Table 2: The level of intellectual disability (ID) in the population of persons with intellectual disability in residential care centers in Israel 2001. Mild ID: IQ 55-70, moderate: IQ 35-54, severe: IQ 20-34 and profound: IQ < 20. Other are 16 persons, who historically were placed in institutions for other reasons and preferred to stay on, because they regarded the institution as their home².

Age in years	Mild	Moderate	Severe	Profound	Other	Total	Percent
0-9	2	13	105	67	0	187	2.93
10-19	36	299	351	195	0	881	13.83
20-39	217	985	954	601	8	2,765	43.41
40-49	150	641	438	152	2	1,384	21.73
50-59	81	440	237	79	5	842	13.22
>60	27	161	93	27	3	311	4.88
Total	513	2,540	2,178	1,121	18	6,370	100.00
Percent	8.05	39.88	34.19	17.60	0.28	100.00

Table 3. Comparison between both residential care and community services for people with intellectual disability in Israel 1990-1999.

Type of Service	1990	1999
Assessment Centers - total assessments	1,000	1,800
Kindergartens for nursing and treatment	900	1,700
Day-care for mild ID	1,600	1,050
After hour care	700	2,400
Leisure care	1,400	1,750
Home help assistance	150	250
Sheltered workshops	1,900	2,500
Long-day care	0	665
Integrated care in community (age 0-3 yrs)	0	140
TOTAL Community	7,650	12,255
TOTAL Residential	5,376
TOTAL Service DMR	13,026	20,025

NURSING CARE

We have no data available to tell us when the first nurse was employed and in which residential care center. The third residential care center to open in Israel, Makim in Ramle, was established in 1954 by a nurse, who had survived the Holocaust¹. Nurses are known to have served as directors of residential care centers during this time period, but there does not exist data or research papers on nursing care for much of the last half of the 20^th century.

Historically, the development of medical services within the Ministry of Labour and Social Affairs (MoLSA) was not planned, but rather evolved in response to specific needs or as a consequence of personal interests.

In 2001² there were the equivalent of 41 full time chief nurse positions (of those only ten registered nurses), 238 full time nurse positions (of those only five registered nurses) and 35 full time physician positions working in the residential care centers. For the residential care centers this means one nurse per 23 clients or 43.8 nurses per 1,000 population, and one physician per 182 clients or 5.5 physician per 1,000 population.

In all community settings (hostels and protected apartments) there are today only five nurses working. This is a reflection of the idea of normalization, where persons living in community settings should receive health care through their local health clinics (physicians and nurses). The five nurses were employed due to specific client needs, in spite of the original idea to only use the service already provided in the community. The statistics for the general population in Israel in 1999⁵ was 7.1 nurses per 1,000 population and 4.7 physicians per 1,000 in the general population.

Within the total population of persons with ID in residential care centers (6,370 persons) there are 1,578 nursing patients, one third of whom require intensive nursing care². The medical profile or medical problems can be seen in Table 4.

Table 4. Profile of 6,370 persons with intellectual disability in residential care center in Israel 2001².

Profile	Numbers	Percent
Gastric tube feeding	30	0.47
Urinary catheter	13	0.20
Gastrostomy	129	2.03
Pressure sore (decubitus)	33	0.52
Dialysis	5	0.08
Oncology treatment	36	0.57
Down syndrome	569	8.93
Fragile X	77	1.21
Epilepsy	1,937	30.41
Diabetes Mellitus	236	3.70
Hypertension	281	4.41
Asthma	135	2.12
Phenylketonuria (PKU)	15	0.24
Self injurious behavior (SIB)	257	4.03
Blindness	315	4.95
Tracheostomy	4	0.06
Other stomy	12	0.19
Wheel chair (normal)	1,209	18.98
Wheel chair (electric)	38	0.60
Walkers	151	2.37

The nursing care required by this population is complex and time consuming. Nurses engage in health supervision, care coordination and triage of acute medical problems. Daily skilled nursing care is required to facilitate safety, nutrition, rest and mobility for individuals with various health needs. Medications are administered at least three times per day for a large percentage of the population in residential care. In 2001, 78% of the population received medication, 29% received anti-epileptic drugs and 51% psychotropic medication every day². In addition to daily routine medication, nurses administer medication for acute problems and preventive medication, like vaccinations. Every year nearly all residents receive a vaccination against influenza. In 2001 a total of 5,515 flu vaccinations were administered.².

Nurses and physicians in residential care centers are responsible for daily examinations of the residents. Every day, there is a physician clinic for persons with acute complaints or problems from the previous night. Residents also receive routine annual examinations. Our goal is that the physician sees each resident at least once every year. Routine laboratory blood work accompanies the annual exam. In 1998 there were 77,643 visits to the general physician, 13,332 visits to the psychiatrist and 18,325 lab tests performed⁶. Blood is drawn in the residential care center, but sent out to laboratories run by the HMOs in the specific areas.

Nurses coordinate dental surveillance and treatment. Our goal is that the dentist sees each resident at least once a year. The nurse is responsible for keeping the dental appointments at one of our 12 dental clinics around the country. Each dental clinic is situated in a residential care center, usually in close proximity to the medical clinic. Increased funding since 1991 has lead to an increase in dental treatment performed under general anesthesia in order to rehabilitate residents with a poor dental status, who may have difficulty cooperating with dental procedures.

The medical clinics in our residential care centers are usually staffed with nurses, usually practical nurses, and 24 hours every day. The physician makes visits during the day, but is not on call at night. Nurses staffing the medical clinic at the residential care center must send the resident to the emergency room or for hospitalization if medical problems arise during the evening or nights. Some of the residential care centers have a small number of beds for observation of ill residents. The total number of hospitalizations for somatic complaints for the population of individuals with ID living in residential care was lower than that of the general population, in spite of their having a “heavy” medical profile⁶. Psychiatric hospitalization or admissions were double for the population of individuals with ID living in residential care, but the number of days in hospital were much less than for the general population⁷.

Nurses are responsible for the coordination of specialty care required for center residents. The physician in each residential care center is usually a physician without specialization or a family physician, who serves as the primary physician for the resident. Residents often need consultation with physician specialists in hospital outpatient clinics or specialist medical centers in the area. In 1998, 5,540 specialty clinic visits and 2,170 laboratory examinations took place outside the residential care center⁶.

All activities mentioned above require the involvement of the nurses. Nurses must also provide psychosocial care, family support, teaching of other staff and support to residents with explanation of procedures, so that anxieties can be put to rest. Nurses often accompany and advocate for residents in the outpatient clinic, dental visit and during hospitalization.

DREAMS FOR THE FUTURE

We have several dreams and wishes for the future. We would like to see more registered nurses coming to work with this special population. We have finally in 2003 received moral and financial support on this from the Ministry, so that hopefully all future nurses employed will be registered nurses. There are challenges to be overcome, such as a shortage of nurses in Israel. Residential care centers must compete for nurses with hospitals and HMOs, because working in a residential care center is less prestigious. A first goal is that all chief nurses in each residential center will be a registered nurse.

We would like to see a subspecialty in intellectual disability for nurses and have had discussions with the Ministry of Health, but so far without any operational solutions.

We would like to see some kind of university affiliation to facilitate education of student nurses in our field of work. Such an educational partnership could bring students on site in our residential care centers, and nurture research projects in nursing care for this population.

Many countries around the world have adapted the Scandinavian model of normalization and deinstitutionalization, which developed in the 1970s, where persons were transferred from large state institutions into services in the community. Several states in the United States of America⁸ have completely closed down their institutions and today serve this population in the community. The transfer has not been without complications, such as earlier death, more health problems or lack of health services⁹ and therefore we believe that it is not a question of either or, but instead a combination of both residential care in small institutions and community settings.

We would like to see the future development of I/DD services in Israel toward both community care and institutional care for the population of persons with ID. We would like to have future residential care centers for persons with ID established within selected areas around the country to provide services for persons unable to stay in the community or at home. These centers also should function as the medical center for persons with ID living in the community or at home, because the present model is not adequate.

The medical center at the institution should provide comprehensive health care services for the target population within the area assigned. These services should included prevention programs, primary care, rehabilitation and treatment in the health field, dental health, nutrition, preventive medicine (vaccination, women’s health etc), physiotherapy and occupational therapy.

We would like to see some special nursing facilities for our residents who require intensive nursing. Today there are approximately 500 residents in need of intensive nursing care already in our facilities. Staffing, equipment, and facilities are not adequate to care for these individuals¹⁰. This problem is now under review in a ministerial committee set up by both the Minister of Health and the Minister of Social Affairs with participation of professionals from both ministries.

We would like to see a Health Division established in the Ministry of Social Affairs as an independent division with its own administration, manpower and budget affiliated directly to the Minister and the Director General¹¹.

CONCLUSIONS

This paper has tried to capture the history and development of the work with persons with intellectual disability from the birth of the modern State of Israel in 1948 until today.

The focus has been on nursing care with a stress on the often difficult and hard work carried out be these health care workers. Over the years there has not been time to think about further education, academic affiliation or research in nursing care or practice.

The work has been illustrated with some data of the health profile, morbidity and mortality of the population. The paper ends with some wishes and dreams for the future.

We would like to see the future development of services for individuals with I/DD in Israel move toward a combination of both community and institutional care. We would like to have future residential care centers for persons with ID established within selected areas or regions around the country to provide service for persons unable to stay in the community or at home. Centers should function as the medical center for persons with ID living in the community or at home, because the present models are not adequate. The medical center at the regional level should provide prevention programs, rehabilitation and treatment in the health field, dental health, nutrition, preventive medicine (vaccinations, women’s health), physiotherapy and occupational therapy for the target population within the whole area assigned.

We believe such a reform, including a Health Division in the Ministry of Social Affairs, will provide a higher standard of nursing care, and will attract nurses with research and academic background. First and foremost we believe that a higher standard of nursing care will improve the quality of care and life of the residents that we serve.