Puerto Rican Families With Adult Children Who Have Disabilities...
What are their Strengths and Needs?

Sandra Magaña, Ph.D.

Table of Contents

• Introduction
• Background Information About the Puerto Rican Families' Study
• Background Information about the Puerto Rican Families
• The Role of the Family in Caregiving
• Services Received by Adults who Live at Home
• Unmet Service Needs
• Plans for the Future
• Advice from Families to Service Providers

 

Introduction

Puerto Rican families who have an adult son or daughter with mental retardation living at home have unique strengths and needs. These families are committed to providing care to their family member with mental retardation and to maintaining caregiving within the family for as long as possible. They also provide an unrecognized contribution to society by providing support and care to their son or daughter and by working to provide the best possible quality of life for all family members. The public service system should offer to these families the resources and support they need to sustain home-based care and appropriate options for family and community based living arrangements when the time or need arises.

Being a "voice" for Puerto Rican families of adults with mental retardation is one of the goals of our research. This report provides detailed information on the Puerto Rican families in Massachusetts who have participated in the study entitled, "Puerto Rican Families of Adults with Mental Retardation: the Impact of Cultural Values on Lifelong Caregiving". The report describes (1) the characteristics of the families in our study, (2) the role of the family in caregiving , (3) their needs for services, and (4) their long-range plans for the future. Our goal is to provide information to the Puerto Rican caregiving and service communities that will help them in advocating for needed services for this overlooked and under served group.
 

Background Information About the Puerto Rican Families' Study

This study was conducted in 1996 and 1997. It was funded by the National Institute on Aging and the Merck Scholars II fund. The study also received continuous support from the Starr Center for Mental Retardation at Brandeis University.

Eighty five families throughout the State of Massachusetts participated in extensive interviews in their homes. Most of the families were of Puerto Rican descent and consisted of mothers as the main caregivers. We also interviewed some families in which the father, a sibling or grandmother was the sole caregiver, and some Latino families that were from backgrounds other than Puerto Rican. We also interviewed two families who had recently placed their daughters in a community residence.

The analyses presented in this report is based on the 72 families who met the following three criteria (1) the mother was the main caregiver, (2) the son or daughter lived at home and (3) the mother or the son or daughter were of Puerto Rican descent. The reason for use of these criteria is that there may be important differences between different types of caregivers, and between different Latino groups that would be difficult to identify with small numbers representing each group. Because the largest group of Latinos in Massachusetts are Puerto Ricans, and because mothers are primarily the main caregivers, information on these families is provided in this report. Our hope is that future studies will include family caregivers other than mothers, and other Latino groups.

Service providers in Latino communities throughout the State of Massachusetts helped in informing families about the study and in encouraging families to participate. Without their support, the study would have been impossible, as personal contact was needed to involve families.
 

Background Information about the Puerto Rican Families

The average age of the son or daughter with mental retardation in our study was 29 years. Three fourths were born in Puerto Rico (75%) while the remainder were born in the mainland of the United States. There were slightly more women (56%) than men (44%) among the persons with mental retardation in our study. The majority are in good or excellent health (62%), although more than a third are in fair or poor health. The majority of persons with mental retardation (81%) exhibit one or more maladaptive behavior, however, mothers indicated that their son or daughter's conduct was a problem in about one third (27%) of the families. The average number of maladaptive behaviors exhibited for each person is about three. Slightly more than half of the sons and daughters have severe and profound mental retardation (52%), while slightly less than half have mild or moderate mental retardation. This is different from other studies which show that the majority of persons with mental retardation have mild and moderate levels. Because the families in this study were located through the service system, it appears that many Puerto Rican persons with mild and moderate mental retardation are not receiving services.

Mothers average 56 years of age. Almost all were born in Puerto Rico (96%) and have lived an average of 21 years in the mainland of the United States. Most of the mothers feel more comfortable speaking Spanish (78%) than English. Fewer than half of the mothers are married and living with a spouse (40%), while the remainder are widowed, separated, divorced or single. Three fourths of the mothers reported themselves to be in only fair or poor health (74%). The majority of mothers have less than a high school education (75%) but there are some mothers who have gone to college or have completed college (18%). The vast majority of mothers do not work outside the home (90%). The average family income is between $15,000 and 20,000 a year.

There are an average of 4 to 5 other children in these families. Some of the other children still live in the household in about half of the families. The average household size is between 3 and 4. In some families there are also cousins, nephews and nieces, grandmothers and aunts who live in the household (21%). In slightly more than half of the families (51%), mothers are also responsible to care for at least one other person besides the son or daughter with mental retardation. This other person may be another child, a spouse or a parent with a disability, a minor child still living at home, or a grandchild.
 

The Role of the Family in Caregiving

Family members play an important role both in helping with direct day to day caregiving tasks and in providing social support to the mothers in this study. Although the mothers help their son or daughter with mental retardation on the majority of daily living tasks in which help is needed (77%), relatives help with more than a quarter of the tasks in which help is needed (26%). Family members tend to help out more when the daily living skills of the person with mental retardation are lower. Family members who help the person with mental retardation in daily living tasks include fathers, siblings, cousins, nieces and nephews, aunts and grandmothers. The family members who help the most are siblings. This study also found that when there were siblings of the person with mental retardation living in the home, mothers experienced better emotional well-being. Mothers expressed the importance of siblings in providing support to their brother or sister with mental retardation. For example, one mother said, "todas sus hermanas la han querido, y la han aceptado y han tradado de ayudarme lo mas que han podido" (all of her sisters have loved her, and have accepted her and have tried to help as much as they could).

Family members are also important in providing social support to the mother. Mothers were asked to make a list of family and friends who provide support to them. The majority of people that mothers listed were family members (87%). Mothers who had more people on their list showed better emotional well-being. Mothers who were more satisfied with support provided by people on their social support list also showed better emotional well being. Having one or two non-family members on the social support list is important for mothers' emotional well-being as well.
 

Services Received by Adults who Live at Home

The adults with mental retardation in our study receive an average of 6 services, most frequently case management (80%), day or vocational program (63%), transportation (63%) respite (48%) psychological services (32%) and social recreational activities (30%). Virtually all (92%) receive some type of income support, primarily SSI.

Virtually all (91%) of the mothers indicated that it was very important that service providers speak Spanish. Mothers reported that 83% of the case managers speak Spanish, 62% of the day program providers have someone who is Spanish speaking, 40% of the transportation conductors speak Spanish, 79% of the respite providers speak Spanish, 46% of the psychological service providers (usually psychiatrists) speak Spanish, and 50% of the social and recreational service providers speak Spanish.

More than a third (37%) of the persons with mental retardation stay home during the day and do not attend a vocational or educational program. Of those that do attend a vocational program, the majority (64%) are in a sheltered workshop or a day activity center. More than a quarter (27%) attend a public school program. When only counting those persons with mental retardation who are 23 years old and older (and not eligible for public school), close to half of them (46%) stay home during the day. Of those that stay home during the day, 19% of the mothers indicated that they do not need a program. These mothers cared for a son or daughter with profound or severe retardation and felt that they could do a better job at home in taking care of their son or daughter during the day. Mothers of the remaining persons who stay home during the day (81%) stated that their son or daughter needs a day program. When asked why they were not attending one, more than a third said they were on a waiting list (36%), about a third said that their son or daughter would not accept the program (29%) and a little less than a quarter (21%) said that the service offered was inappropriate for their son or daughter. Some mothers explained why they felt the service offered was inappropriate. They stated that the program does not feed their son or daughter they way they as mothers do at home, and that the program often sends them back home soiled or dirty. These issues were very important to the mothers.

One type of service that a small percentage of families received (17%), but that families receiving the service reported great satisfaction with (92% were completely satisfied) were programs designed specifically for Latino families. In some geographic areas throughout the state, the Department of Mental Retardation contracts with community agencies to provide services to Latino families. These programs have Spanish speaking service providers and are given the freedom to design programs that are family focused and that meet the needs of Latino families with mental retardation.

Findings from this study show that services that are more family focused are important for Puerto Rican adults with mental retardation. Not only do they have specific service needs themselves, but their families who are committed to caring for them have important needs. Some of the families may need help with basic survival needs such as income and housing. Mothers may be struggling to provide care for other family members and may need help in obtaining services for them. Many mothers could benefit from health care and mental health referrals as well. Some mothers may need help in expanding their social support networks. This kind of family focused approach is very labor intensive yet important for these families' well being. Overall, these families save public funds with their commitment to provide care in the home. Families need to be supported in this commitment and service providers need to be supported in their efforts to implement a more family focused approach.
 

Unmet Service Needs

When a person with mental retardation does not receive a particular service, we ask the parents if such a service is needed. The following information refers to totally unmet needs for services and does not reflect partially met service needs.

The large majority of mothers (90%) reported that their son or daughter has unmet service needs. This is an important issue because our study found that the more unmet needs the son or daughter has, the worse the mothers' emotional well being is. On the average, these families report needing between 3 and 4 additional services not currently received, most frequently social and recreational activities (53%), speech therapy (43%), occupational therapy (38%) and respite (29%).

When asked why their son or daughter was not receiving needed services, mothers most frequent responses were "I don't know", "I didn't know the service was available" and "I don't know who to ask for service". These responses show that mothers need more orientation to the service system and how it works. They need to be told exactly what services their son or daughter is entitled to or that might be available with a little persistence. They need to be shown how to follow up with service providers once a request is made. Service providers need to be given the support to get more involved with families and to assess family needs more thoroughly.
 

Plans for the Future

Mothers in this study have clearly expressed the importance of maintaining the caregiving process in within the family. Even though a large number of persons with mental retardation in this study have severe disabilities, the question of placement outside the family is rarely considered. Only five of the mothers have their son or daughter on the waiting list for residential placement. The only characteristic of the son or daughter related to being on the waiting list is a high number of maladaptive behaviors.

To document mothers' expectations and hopes for their son or daughter's living arrangements within the next two years, we asked two questions:

1. Where do you expect your son or daughter to be living in two years?

2. What is the ideal place for your son or daughter in two years?

The majority of mothers expect their son or daughter to live with them in two years (96%) and believe that home is the ideal place in two years (86%). Of those who do not feel that home is the ideal place, seven reported that a community residence is the ideal place which is fairly close to the number on the waiting list for residential placement. Two felt that independent living was the ideal place and one felt that with another relative would be the ideal place in two years.

We also asked mothers a third question pertaining to the longer-range future:

3. Where do you expect your son or daughter to be living after you are no longer able to be the primary caregiver?

More than half of the mothers (58%) expect that their son or daughter will eventually live with another family member. One mother summed up this expectation, "Yo no quiero que el sufra, yo no queiro que mi hijo vaya a sufrir el dia de maZana cuando yo le falte y yo se bien que mis hermanos y mis hijos lo van a cuidar a el como hermanos que son y ellos estan de acuerdo." (I don't want him to suffer, I don't want my son to suffer the day that I am no longer around and I know very well that my siblings and children are going to care for him as siblings should, and they agree.) The types of supports that these relatives–primarily adult siblings–will need once they assume caregiving responsibility may well be different than those of aging parents, and will be a growing concern for the service delivery system.

Only 22% of the mothers expect that their son or daughter will eventually live in a community residence. The majority of these mothers do not have their son or daughter on the waiting list for residential services, however. None of the mothers said their child will eventually live in an institutional setting. Less than 10% of the mothers said they do not know where their son or daughter will live, and l2% said their son or daughter would live independently or some other arrangement. A couple of the mothers described what they meant by some other arrangement: they would like for their son or daughter to live in the family home with caregivers provided by the Department of Mental Retardation who would live with the son or daughter.

To summarize, Puerto Rican mothers in this study have definite plans in mind for the future, but the service system does not seem to be involved in these plans. There are three ways that the service system needs to be involved as identified by our study:

 

1. There is a need to engage and support adult siblings and other relatives who will become the primary caregivers when the parents are no longer able to continue in this role. Although some of these relatives may be informed about the service system and the service needs of their family member with the disability, it is generally the case that there are gaps in their knowledge and their need for support will be considerable.

2. There is a need to ensure that families know the appropriate processes if their expectation is that their son or daughter will be in a community residence. For example, they may need to be informed that they should place their son or daughter on a waiting list for residential services and that they may want to view community residences in advance, etc., If the families have plans that involve complicated legal steps such as arranging for the son or daughter to remain in the home after their parents are deceased, they will need legal and technical assistance to make these plans a reality.

3. There is a need to assist families in making plans when no plan exist. Some parents do not have information about options for their son or daughter's future residence. They may never have seen or visited community living arrangements. It is also possible that they may not be aware of how to add their son or daughter's name to a waiting list for residential placement , and might need assistance in making legal and financial plans.

Advice from Families to Service Providers

We asked parents for their personal message to service providers--what would they like professionals who plan programs for families to know about their situation and needs? In response, parents provided a wealth of ideas and suggestions.

First, many parents expressed gratitude to service providers for the support and expertise they have given to their families over the years.

"Para los que me están dando la ayuda, las oficicinas que me estan dando servicios, bueno yo hasta ahorita estoy muy agradecida con los servicios que me han dado para mi hijo, y que los servicios buenos." (For those that are helping me, the offices that are giving me services, to this day I am very grateful with the services they have given me for my son and they are good services)

"Bueno yo creo que el programa es muy importante, las personas de habla latina para ayudar a las personas que tiene niños con retardación mental, porque la comunicación de la misma lengua de uno es muy importante porque hay veces que ciertas palabras en inglés tienen otros derivados.." (I believe the program is very important to have people who speak Spanish to help people with children with mental retardation because communication in the same language is very important as there are times when certain words in English have other meanings.)

A very common message was that service providers should take into account the family and its cultural values.

"I would say they need to develop a little more understanding of our cultural background, and the unity of the family, the importance of taking care of our own and be respected. And maybe try to make way for us to do the right thing without the family breakup. They need to listen (not have) attitudes looking down, patronizing and (showing) the lack of respect for a family that wants to keep a child at home and give him the love he needs."

"Bueno pues que estuvieran más pendientes de su familia que están en esa condición, que estuvieran un poco más al cuidado y velar más las necesidades que tienen esas personas." (That they pay more attention to families in this condition, that they take more care and be more vigilant about the needs of these people.)

Some mothers want service providers to understand their spiritual acceptance of the condition of their son or daughter and their deep commitment to providing care to them.

"Muchos doctores me han hecho preguntas sobre el caso de ella, yo siempre les he dicho que yo estoy conforme así como ella nació a este mundo, y mientras yo viviera no se la daba a nadie, aun ni a un gobierno que me la reclamara entonces estuviera más bien conmigo.." (Many doctors have asked me about her case and I have always said that I accept her as she was born into this world and as long as I live, I won't give her up to anyone, not even to a government that would demand me to, she would be better off with me.)

Other mothers want service providers to understand their faith in God and to also put faith in God in the course of providing services.

"Pues seguro, que les quiero decir que le pongan toda su Fé en Dios, y después en lo que ayudan a uno acá." (Surely what I want to say is that they put all of their faith in God and then in how they help us here.)

Mothers would like service providers to help their son or daughter progress to their potential as a human being.

"Pues yo diría que por lo menos hubiera buen servicios para ellos, y que los ayuden a salir adelante a progresar, para que no se sientan impotentes porque tambien tienen derecho y que no se burlen de ellos porque son humanos como todos, porque para mi, mi hijo es lo mas grande de mi vida." (I would say that at a minimum have good services for them and help them to progress and move forward so they don't feel impotent because they also have rights. And don't make fun of them because they are human like all of us...for me my son is the best part of my life.)

A very important message expressed by some mothers is the constant struggle with feeling discriminated against because of their Hispanc background.

"..que hubiera más servicios y un poco más de consideración especialmente con los padres, porque somos los que estamos bregando con ellos, y bueno yo diría que aquí hay mucha discriminación, como a mi donde quiera que yo iba, que me mandaban para acá y para allá, que me decían lleva a esta criatura a este sitio y pues me negaban los servicios. ¿Por qué ha sido que me los han negado? Pues yo creo que ha sido por eso, por ser hispano." (That there be more services and a bit more understanding, especially for the parents because we are the ones dealing with them, and so I would say that there is much discrimination here; like me, wherever I would go, they'd send me here, they'd send me there, they'd tell me take this child to this place and they'd deny me services. Why have they denied them to me? I believe it's been because of that, for being Hispanic.)

As a final message, many mothers expressed the need for both service providers and families to have much love for their son or daughters with mental retardation.

"Bueno en este caso yo diría que para bregar con estos casos uno tiene que prepararse primero, ponerse en manos de Dios porque él es quien tiene le da la fortaleza a uno, la capacidad la inteligencia, para que uno acepte estos casos, y saber como tratarlos, y se necesita tener mucha calma mucha paciencia y mucho amor, sobre todo mucho amor porque si uno no tiene amor salta la casa por la ventana." (Well, in this case I would say that to deal with these cases you have to first prepare yourself , put yourself in God's hands because he is the one who will give you strength and the intellectual capacity to accept these cases and know how to treat them, and you need to be very calm and patient and have much love; especially much love because without love there is no home.)