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Adults with Cognitive Disabilities/Mental Retardation: Approaches to Adult Faith Formation
A Resource and Idea Book
March 14, 2003
Secretariat for Family, Laity, Women and Youth
United States Conference of Catholic Bishops
Approved by the Committee on the Laity
Chapter 1 - Introduction
Chapter 2 - Parish Life
Picturing The Welcoming Faith Community
Marks of Respect
Chapter 3 - Participation in Parish Ministries
Welcome and Justice for Persons with Disabilities
Chapter 4 - Participation in the Liturgical Life of the Parish
Special Liturgies
Chapter 5 - Evangelization
Outreach
Parish Resources
Chapter 6 - Parish Advocacy
Parish Advocate
Chapter 7 - National Organizations
Chapter 8 - Religious Education Resources and Publications
The Church's pastoral ministry exists to sustain the work of the Gospel. One way it does this is by nourishing and strengthening lay men and women in their calling and identity as people of faith, as contributors to the life and work of the Church, and as disciples whose mission is to the world. To grow in discipleship throughout life, all believers need and are called to build vibrant parish and diocesan communities of faith and service. Such communities cannot exist without a strong, complete, and systematic catechesis for all its members. By "complete and systematic" we mean a catechesis that nurtures a profound, lifelong conversion of the whole person and sets forth a comprehensive, contemporary synthesis of the faith, 1) as presented in the Catechism of the Catholic Church. This catechesis will help adults to experience the transforming power of grace and to grasp the integrity and beauty of the truths of faith in their harmonious unity and interconnection-- a true symphony of faith. 2) Adult faith formation, 3) By which people consciously grow in the life of Christ through experience, reflection, prayer, and study, must be "the central task in [this] catechetical enterprise," 4) Becoming "the axis around which revolves the catechesis of childhood and adolescence as well as that of old age." 5) This can be done specifically through developing in adults a better understanding of and participation in the full sacramental life of the Church.
From the Introduction to Our Hearts Were Burning Within Us, A Pastoral Plan for Adult Faith Formation in the United States. Copyright © 1999, United States Catholic Conference, Inc. All rights reserved.
In the Spring of 2001, the Bishop's Committee on the Laity conducted an internet survey inviting Catholics to suggest how parishes can better help people integrate their faith with their daily lives. The highest priority area selected by the respondents was adult faith formation. Listening to suggestions from the laity, the bishops began to address this need by listing resources and lists of Catholic publishers on the internet. In addition, the Committee on the Laity surveyed every Catholic college, university, seminary and theologate and published a list of available distance-learning programs in theology/ministry/religion on the internet.
Of the adult Catholic population, one group that would not be assisted by these resources is adults with cognitive disabilities. This Resource and Idea Book is an attempt to begin to address this need. The decision to concentrate on cognitive and mental disabilities is not meant to suggest that there isn't much more that needs to be done to address the faith formation of all Catholic adults, including those with other disabilities. Rather this is a starting point to help share ideas and provide links to existing resources.
Since an important part of faith formation is inclusion within a faith community, the main focus of this guide is the inclusion of all people within the local parish. The guide is composed of a collection of ideas, programs and resources from parishes, dioceses and organizations across the United States. We are grateful to all those who responded to our request for information, those who sent material, and those who sent notes and emails that encouraged us during the compilation of this material. We are especially grateful for the continued work of the National Apostolate for Inclusion Ministry (NAfIM) and the National Catholic Partnership for Disabilities (NCPD.)
One challenge that is apparent is that of language and terminology. Some prefer to use the term cognitive or intellectual disability rather than mental retardation. Others insist that the term mental retardation is still the most appropriate. We have chosen to include both terms in this booklet. It is apparent that there is a difference of language in various parts of the country and also between different organizations (both within Catholic organizations and also within government organizations.)
On the following pages, we have included quotes from various sources and have used these statements as they were originally written. In some cases, the terminology used (e.g., developmental disabilities) is not precise. It is important to remember that the term "developmental disabilities" can be applied to more than just cognitive disabilities. For example, people with spina bifida or with cerebral palsy have developmental disabilities. Yet, intellectually these individuals may be brilliant. This resource booklet is not meant for them. We recommend that resources and programs at the parish level take these language and terminology issues into account.
Finally, while the vast majority of people with mental retardation are either mildly or moderately limited in their cognitive abilities, there are a precious few who have severe limitations. It is not unusual for some individuals to have more than one disability. It would be important for a parish or diocese to be in touch with local or national resources which can advise them on the best approach to a broad range of accommodations.
We must recognize and appreciate the contributions that persons with disabilities can make to the Church's spiritual life and encourage them to do the Lord's work in the world according to their God-given talents and capacity.
Welcome and Justice For Persons With Disabilities, A Statement of the U.S. Catholic Bishops, No. 5-311, Copyright 1999, United States Catholic Conference. All rights reserved.
We are the Church: The Church is All the People of God.
We slow down because we are in the presence of God"s grace among people who are the adopted sons and daughters of God.
We stop and look at the faces of our brothers and sisters.
Our human eyes see differences; the grace in us sees the beloved children of God made in His image and likeness. We see our brothers and sisters as beloved of Our Father, as Christ bearers and as blessed with Gifts of the Holy Spirit.
We share the Christ we bear within us with our brothers and sisters; from our brothers and sisters, we accept with joy the Christ they bear in their bodies. As the beatitudes spoken by Jesus Christ describe his kingdom, the kingdom comes when we let the beatitudes flourish in us and in our brothers and sisters.
We let the love of the Father, Son and Holy Spirit flow from us to our brothers and sisters; we let the love of the Father, Son and Holy Spirit within our brothers and sisters flow through us.
As our heavenly Father loves us the way He created us, we love our brothers and sisters the way they are.
As our heavenly Father graciously forgives us for our faults, we forgive our brothers and sisters for their mistakes.
As our heavenly Father lovingly gives His attention to our prayers and needs, we listen to our brothers and sisters.
As our heavenly Father kindly and lovingly showers us with extravagant gifts, we give to our brothers and sisters with loving-kindness.
As our heavenly Father graciously accepts our every prayer and good deed, we receive with loving appreciation the gifts our brothers and sisters freely share with us.
As our heavenly Father never fails to be pleased with His children who love Him, we smile at our brothers and sisters.
We begin to know and love ourselves as God knows and loves us, best, when we are in community with our brothers and sisters. Worshiping in a faith community with all of our brothers and sisters, we all, as if in a mirror, look like the people of Christ's kingdom.
We are the Church: The Church is All the People of God.
Barbara J. Lampe, Executive Director
National Apostolate for Inclusion Ministry
PO Box 218, Riverdale, MD 20782
1-800-736-1280; www.nafim.org |
By virtue of being created in God's image and likeness, all persons deserve respect and dignity. In order for the Body of Christ, the Church, to be complete, the gifts and contributions of each person need to be welcomed and nourished. Each person has God-given gifts necessary for building up the body of Christ, the Church. When you meet someone speak directly to him or her. If the person has a companion or parent, do not ignore the person by speaking to the companion. Speak to the person, making eye contact with the person even if this involves sitting or stooping down to talk (in the case of a person who is small in stature or in a wheelchair.) Never treat an adult like a child either through your actions or speech. Patiently wait for a person to respond to your questions and ask him or her to clarify anything you do not understand; do not look to the companion for clarity, let the person decide if he or she needs help in articulating their views and ideas. The bottom line is to treat each person as you would like to be treated if you were new to the parish community.
"I have always wanted to talk to the Pope because frankly I have not been happy about having a disability all my life. I have my faith in God, but it is still very upsetting to me that I have this handicap. . . (When the Pope came to Denver), they told me I would see him but would not be able to talk to him. However, closer to the time, I was told I could speak to the crowd in front of our Holy Father for two minutes. Well, Sister, it was seven and one-half minutes! I told the Pope and everyone gathered how much faith I have in God and in my belief that you have to keep trying, no matter WHAT! After I finished my talk, I turned and bowed to the Pope and he waved me to him. He stood up and gave me a BIG HUGE BEAR HUG and told me that Jesus loves me. I patted him on the back and hugged him.
"Now my soul feels very peaceful, more than I did before this wonderful experience ever happened to me. I feel that my body is more calm and I don't have knots of tension all the time. Everything is lifted from me. I take things calmer: if things work out-FINE. If they don't, I am satisfied. I just let life come and go, as I am filled with the love of Christ. I know whatever God wants me to do he will tell me in his own special way. I just want to tell everybody whatever you want to do in life, do not give up. Pray to God and God will help you because HE Loves You."
Jimmy Mulzet shares his experience with Sr. Bernadette Downes of the NCPD Board, NCPD National Update Fall 93.
By David Amico, Diocese of Albany NY
In their November 1998 statement, Welcome and Justice for Persons with Disabilities, the Bishops of the United States wrote "Parish liturgical celebrations and catechetical programs should be accessible to persons with disabilities and open to their full, active, and conscious participation according to their capacity." (Par. 5) This vision of welcome and inclusion has become a living reality in many parishes throughout the Diocese of Albany. One of these is Saint Mary's in Amsterdam. It all began with a request made by Jimmy Garguilo, a young man with developmental disabilities.
Jimmy had watched a video, which showed a disabled young woman like himself, serving as a Eucharistic minister. He approached Saint Mary's pastor, Father James Gulley, about becoming a Eucharist minister himself. Father Gulley was delighted, and he took it upon himself to instruct Jimmy about this ministry. They both agreed that they would keep it as a surprise for Jimmy's mother, Fran, knowing that she would be more than supportive.
In fact, at the same time, Fran and a team of parishioners were trying to develop a parish ministry with persons with special needs. They were planning to speak about this ministry after Communion at all the Masses on an upcoming weekend. Father Gulley and Jimmy decided that this would be a perfect time for him to begin his service as a Eucharistic minister. Fran was indeed surprised and also filled with pride and joy, as she watched, amid her tears, Jimmy distribute the Body of Christ to the assembly.
From that time, the parish's ministry with persons with special needs began to grow and develop in wonderful ways. Persons with special needs have had more opportunities for faith formation and spiritual growth within the parish. At the same time, their participation in the liturgical life of the parish has increased.
Today, persons with special needs at Saint Mary's are truly seen as parishioners and not as guests. They are considered vital members of the worshiping assembly and community of faith. As such, persons with special needs have been encouraged to serve in various liturgical ministries.
For example, in addition to being a Eucharistic minister, Jimmy Garguilo now serves as master of ceremonies for parish funerals, while others serve as greeters and members of the music ministry at the Sunday Eucharist. Soon, the parish hopes to have more persons with special needs serve as Eucharist ministers and also as lectors. Led by Father Gulley's example, the parish sees that everyone has a gift to share that can enrich the entire Body of Christ.
In Welcome and Justice, the Bishops wrote: "Since the parish is the door to participation in the Christian experience, it is the responsibility of pastors and laity to assure that those doors are always open. (Par. 6) Saint Mary's Parish in Amsterdam has accepted this responsibility, and in accepting it has experienced many blessings. It is our fervent hope that every parish, each in its own unique way, can also be a place of welcome and inclusion for persons with special needs. Then, we can truly pray with one voice: "How wonderful are the works of the Spirit, revealed in so many gifts! Yet how marvelous is the unity the Spirit creates from their diversity..." (preface for the Mass of Christian Unity.)
Article by David Amico, Associate Director for Catechesis for Persons
with Developmental Disabilities/Special Needs.
Diocesan Office of Evangelization & Catechesis, Diocese of Albany, New York, November 2001.
It is essential that all forms of the liturgy be completely accessible to people with disabilities, since these forms are the essence of the spiritual tie that binds the Christian community together. To exclude members of the parish from these celebrations of the life of the Church, even by passive omission, is to deny the reality of that community. Realistic provision must be made for persons with disabilities to participate fully in the Eucharist and other liturgical celebrations such as the sacraments of Reconciliation, Confirmation and Anointing of the Sick. The experiences and needs of individuals with disabilities vary, as do those of any group of people. For some with significant disabilities, special liturgies may be appropriate.
Pastoral Statement of U. S. Catholic Bishops on People with Disabilities Copyright 11/16/78, USCCB. Updated 1989. All rights reserved.
All liturgies should be planned and celebrated in a way that includes the full, active, and conscious participation of all members of the assembly according to the capacity of each. We recognize that the faithful are not passive spectators but rather active participants according to their order in the church. The bishops' statement does however recognize that in order to assure the active participation of people with disabilities it may be necessary at times to plan and celebrate special liturgies. The parish should upon occasion provide special liturgies which serve as formation for adults living at home and in group homes within the parish boundaries to enjoy fuller participation in the Sunday liturgy. In special liturgies, the disabled parishioners have the opportunity to fill all ministerial roles, save that of the celebrant. The following article by Fr. Gillum, O.F.M. Cap., addresses these types of liturgical celebrations.
Fr. William Gillum, O.F.M. Cap. is the Director of Pastoral Care at McGuire Memorial Home, an intermediate care facility for mentally retarded persons. In seeking to address the spiritual needs of the residents of the McGuire Home, Fr. Bill has developed and implemented a program that uses special liturgies to prepare the residents to join the larger community of a local parish, St. Cecilia. In his document, Father Bill states the following:
"The spiritual needs of children and adults with mental retardation and other severe disabilities are attempted to be met through relationships that evolve into Christian community. Drawing upon the sensory and motor skills of the young person with a severe disability, the Christian community gathered in an experiential prayer form, a "sacred flow" of uninterrupted prayer has the wonderful opportunity to evoke a sense of the sacred within all who are gathered.
"All learn, in a unique and experiential way, the necessary aspects of our Christian faith: the beauty and love of God, the dignity of our human bodies, the person of Jesus Christ who blesses, saves, and heals our human bodies, the Church as Christian community immersed in relationships, the Eucharist, and the sacraments that help us learn about our faith.
"Within that sacred flow' of worship which utilizes peace-filled sounds of music, touch, hearing, and listening, and all the other senses, in an affective venture, we are enabled to celebrate and intuit God' s loving, nourishing, compassionate, and healing presence. It leaves us in His peace.
"Spiritual needs and a sense of belonging are now strengthened as this small Christian community celebrates itself as a part of the Body of Christ we call St. Cecilia Parish. At the same time this small Christian community is prepared to venture into the local parish, the larger Christian community.
"The bonding of McGuire Memorial Home and St. Cecilia Parish enables everyone involved to uncover, discover, and heal our disabilities, and by the power of God's love and Spirit we are enabled to celebrate our abilities: unity, belonging, and the diversity of gifts that enable us to make known the presence of Jesus Christ."
From Evoking The Sacred: Prayer Experiences in First Eucharist Preparation and Inclusion into the Local Parish. by Fr. William Gillum, O.F.M. Cap. Reprinted with permission from National Apostolate for Inclusion Ministry Quarterly Publication, Spring 1998.
In the case of many people with disabilities, integration into the Christian community may require nothing more than issuing an invitation and pursuing it. For some others, however, full participation can only come about if the Church exerts itself to devise innovative programs and techniques. At the very least, we must undertake forms of evangelization that speak to the particular needs of individuals with disabilities, make those liturgical adaptations which promote their active participation and provide helps and services that reflect our loving concern.
Pastoral Statement of U. S. Catholic Bishops on People with Disabilities. Copyright 11/16/78, USCCB, Updated 1989.
"Families with Adults Living at Home"
Often adults with mental retardation and cognitive disabilities continue to live at home after finishing their entitlement to a free and appropriate public education. At this point in time, the parent-caretaker may become more isolated because their adult child is no longer in a large social setting with others like himself and herself. In most cases, the adult will not find employment or other work that is valued by society. For both the adult and his family there is an ongoing grief process without a termination point. The weekly Eucharistic Celebration may be the only constant in the life of this adult and his or her parents. In the case of an adult child with severe physical disabilities, the consolation of weekly Mass may not be available.
The parish should take steps to identify families with adults living at home through surveys or through evangelization efforts by the Legion of Mary and other parish organizations.
Jack Green former Director of Disability for the Archdiocese of Miami offers some principles for the parish to work with families with an adult child with disabilities living at home:
A parish must be prepared emotionally, physically, spiritually, and financially to accept and welcome people with disabilities. In the beginning, it is necessary to enlist the full support of the pastor and the bishop. In their leadership capacities pastor and bishop need to commit to change and to be there for the long haul.
When a faith community actively seeks to invite people with mental retardation and their families to participate in the parish, the issues will involve a different kind of accessibility and will require changes in heart, attitudes and effort. What needs to be done first is to make a commitment to an evolving plan beginning with concrete situations. This means that persons with mental retardation and their families will not be told what they need to do in order to be a part of the parish community. Rather, the parish community will commit to assisting in the development of an inclusion plan for the family.
Including persons with mental retardation and their families and caretakers in parish life does not require a comprehensive major program at the outset. Each member of the Body of Christ possesses unique dignity and as such has gifts of the spirit as well as human and spiritual needs.
In responding to individual needs a "ministry" or "program" will be launched. As people with disabilities are welcomed to share their situation, they will be teaching themselves and the parish how to minister and the business of building relationships will begin.
The availability of resources, volunteers and funds will vary. Each situation will be as unique as the people involved. It may not be possible for a parish to initially respond to every need or demand. However, it would be in the best interests of everyone involved to know what resources are available in the community at large and to help the circle of persons around the person with a disability through the maze.
A vital aspect of inclusion is the support and encouragement of leadership by all persons with disabilities. This is very important. When persons with disabilities are made visible in the faith community, their fellow parishioners will appreciate their contributions to the life of the parish. When parishioners can personally recognize the person with a disability for his or her gifts and talents, they will find themselves most aware of the powerful love of Christ for us all.
Volunteers need to be recruited and trained. Recruitment and training should be specific to a situation. Some people with disabilities need a ride; some people need a committed friend. The volunteers should be fully informed about what commitment of tasks and time are needed. Volunteers should be given spiritual, emotional, educational, and physical preparation. The better a volunteer understands the situation of the person and his or her needs, the better the volunteer's response will be. There is nothing more disheartening for a volunteer to have no job or a misunderstanding of what time or task needs to be accomplished. Preparation for volunteers should encourage relationships, increasing knowledge, reduce fears and expand comfort zones. Dioceses and deaneries can be very helpful in coordinating such training for parish volunteers.
Existing groups within the parish community should be encouraged to welcome people with disabilities. Groups of men, women and youth in the parish, if given the opportunity, will assist in responding to the needs of people with developmental disabilities. Each group is unique in its gifts and talents. Proper matching of the group to persons needing welcome in the parish enable all to grow in Christ.
Parish spaces need to be physically accessible. Many recent laws and building codes provide guidelines for including people with a variety of disabilities. Sanctuaries can be a stumbling block, but many faith communities have found creative ways to allow for full participation of their disabled peers with minimal cost. Moreover, accommodating the disabled historically has provided accommodations for the wider community. For example, aging people and parents with infants in strollers have found curb cuts and automatic door openers increase their own accessibility to community services. And, the accessible parish is not only concerned with physically facilitating the reception of the Eucharist, but is also concerned about creating and maintaining welcoming attitudes as well.
The Sunday Mass or service is the place to begin to build the welcoming atmosphere for the inclusive parish. For Catholics the Eucharist is the Source and the Summit of Christian life. The Sunday celebration is the primary gathering place where parishioners can interact and build relationships. All parishioners should enter the sacred space with preparation. People with developmental disabilities should be encouraged to express how they feel about Mass and they should be encouraged to help the parish identify what it needs to do to be a place where they feel at home. Well-planned and executed inclusive liturgies or services will promote inclusion in other parish activities.
The Bible, especially the Gospels, needs to be read, taught and preached with an "inclusive" spirit. Homilies as well as other traditional parish activities can become forums for inclusion. Our God in the creation story found EVERYTHING was good and the people He created were very good. Scripture study and sharing should encourage spiritual growth while avoiding an attitude of pity; it should bring out issues of justice and the response of discipleship. Then, following the example of Jesus, parishioners can expand their horizons to those who are even more marginalized and treat them as the beloved children of God that they are. All ministries should be open to those who have gifts and the ability to develop the skills to serve. It is important to note that there is no benefit in putting people in places of service if they cannot do the job.
Remember, changes do not usually happen overnight. It is important to emphasize the importance of education, awareness and sensitivity. A variety of programs, such as Welcome to my World help us to do this. It is important to share stories and to be available to speak to parish groups. Even better, encourage people with developmental disabilities to tell their own stories. Be willing to take time to build relationships. Creating an inclusive faith community is a lifetime effort. Envisioning this goal, working for this goal, makes it happen!
From Aspects of the Inclusive Faith Community By Jack Green. Reprinted with permission from National Apostolate for Inclusion Ministry Quarterly Publication, Summer/Fall 2001.
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