Addressing the Spirituality of Children with Special Needs and Their Parents
"For my house shall be a house of prayer for all people"
Isaiah 56:5
AThe Lord is my shepherd; I shall not want.
He maketh me lie down in green pastures;
He leadeth me beside the still waters,
He restoreth my soul,
He Leadeth me in the path of righteousness for his name=s sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For Thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; my; cup runneth over.
Surely goodness and mercy shall follow me all the days of my life,
And I will dwell in the house of the Lord forever.@
Psalm 23
A. Definitions
The Americans with Disabilities Act (ADA), Public Law 101-336, signed into law on July 26, 1990, mandates equal access for people with disabilities to employment, state and local government services, transportation, public accommodations and services provided by private entities, and telecommunications.
Under ADA, disability is defined in the following manner: a physical or mental impairment that substantially limits one or more of the major life activities of an individual such as walking, speaking and breathing; a record of such an impairment; or being regarded as having such an impairment.
As is true with the general public, 17% of the members of religious congregations have one or more disabilities. For the purposes of ADA, the definition of disability is very broad-based, and includes among others, mobility and sensory impairments, mental illness, mental retardation and learning disabilities. This definition of disability includes diabetes, cancer, HIV/AIDS, arthritis, respiratory and cardiac conditions and chronic back pain.
Diagnostic categories of children with disabilities include the following:
INTELLECTUAL NEEDS - gifted, educable mentally handicapped, trainable mentally handicapped and severe/profound mentally handicapped
GENETIC DISORDERS - Downs Syndrome, Fragile X Syndrome, over 200 syndromes
GLOBAL DEVELOPMENTAL NEEDS - pervasive developmental disabilities (autism)
PHYSICAL SPECIAL NEEDS - Cerebral Palsy, Spina Bifida, Muscular Dystrophy, Arthritis, Multiple Sclerosis, spinal cord injuries, brain injuries, stroke victims, Cystic Fibrosis, chronic long term illnesses
PERCEPTUAL SPECIAL NEEDS - hearing impaired, visually impaired, expressive language/communication disorders, Specific Learning Disability (SLD)
EMOTIONAL SPECIAL NEEDS - emotionally handicapped, severely emotionally handicapped, school phobia or other phobias, separation anxiety or other anxiety/panic disorders, depression, conduct disorder, Oppositional Defiant Disorder (ODD), eating disorders, elimination disorders
NEUROLOGICALLY-BASED SPECIAL NEEDS - Tourette's disorder, seizure disorder, Attention-Deficit/Hyperactivity Disorder (ADHD), closed head injuries.
The World Health Organization defines disability as any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner, or in the range, considered normal. This means that, apart from its underlying origins and ultimate effects, disability is a limitation in life activities, such as working and living independently, caused by impairments or other chronic conditions, such as blindness or arthritis. Disability involves many areas of functioning, such as physical ( e.g., walking), emotional (e.g., personal relationships), and mental (e.g., problem solving).
B. Statistics
The statements regarding the numbers of the disabled in the general public and those within a church congregation indicate that 17% of the individuals involved have one or more disability. In the United States, with a population of 248,718,291, 4,228,210 have one or more disability. In Hillsborough county, with a population of 906,530, 154,110 have one or more disability. At a pilot study setting, Idlewild Baptist Church, with a membership of 6,000, 1,020 are estimated to have one or more disability. Statistical data indicates the possible presence of numbers of individuals with disabilities ready to benefit from full participation in a religious community. Sadly, only a small percentage of people with disabilities have access to congregations where attitude, communication and architectural barriers have been eliminated.
To get an idea of the need, consider the largest Protestant denomination in Florida, there are 2200 Southern Baptist Convention churches. Of these churches, there are only twelve that provide distinctive and identified services for individuals with disabilities. In Hillsborough County, only one church, First Baptist of Brandon, had provided for its members who are mentally handicapped at the time of formation of the Building Bridges to Worship Program. Statistically, only .5% of the churches who are members of the Southern Baptist Convention have a ministry for the members with disabilities in their congregations. Based on the demonstrated statistical evidence or our example denomination, there is indeed a need for a ministry for people who have disabilities in religious communities.
C. Justification
Why a Special Needs Ministry? Religious leaders over the centuries have set the model for ministering to the needs of persons with various handicaps. They have responded to the needs of lepers; to persons with paralysis; to persons who were lame, blind, deaf or maimed; and to many other persons with profound problems. Most of these persons were considered hopeless and their pleas to faith communities over the years were desperate cries for help. Having a disability represents a hopeless situation to many. Many individuals with disabilities are on a quest for the miraculous answer. They seek physical and sensorimotor cures, educational cures, nutritional cures and behavioral cures. The faith community has a spiritual message of hope that must be presented and shared. Faith communities have set the example.
Many people of faith, from every religious persuasion, are finding the need to examine disability in light of their understanding of God as Creator and Sustainer of life. God does not send a disability. Rather, God is with us in the adversities of life, just as God is with us in the joys and triumphs of life. God loves us with an everlasting love and is aware of our needs, fears, anxieties and hopes. It is God's spirit that moves us to pray, especially in times of pain, sorrow and loneliness. God's spirit removes the attitudes that isolate people. And, God's spirit motivates a congregation to be affirming, inclusive and welcoming.
What is it that religion can offer to people who are lonely, disabled or not? Religion offers to redeem us from loneliness by teaching us to see our neighbors as ourselves, to be aware of their humanity, their fears and feelings. Religion offers community to our lonely human souls. The house of worship represents one place where the barriers fall and we all stand equal before God. If a congregation is worth its salt, it is in the business of improving the lives of others. People attending faith communities represent a wide variety of socioeconomic levels, occupations, and social networks. The match between the needs of individuals with disabilities and the local congregations is truly "made in heaven". Why have only a small percentage of faith communities offered their messages to people with disabilities?
D. Approach
To develop a Special Needs Ministry there are many varied procedures involved. Locating the individuals with disabilities, assessing individual needs, training a cadre of volunteers, establishing space needs, making a commitment, praying for direction, educating the congregation and preparing the curriculum are necessary components needed in the preparation of a special needs ministry. With each ministry, each mission, the individuals involved are of primary importance. People with disabilities want neither pity-ridden paternalism nor overblown admiration. They insist simply on common respect and the opportunity to build bonds to their communities as fully accepted participants in everyday life.
God expects us to be competent and knowledgeable in our commitment. A ministry to individuals with disabilities and their families demands that a person be informed about the disabilities. Just as other professionals maintain a concerted effort to stay informed, so individuals dealing with people with disabilities should be knowledgeable about the conditions and the persons with whom they are involved. There are numerous procedures that can be employed to accomplish this: read about disabilities; watch documentary videos; talk to parents of children with disabilities; attend training conferences; speak to experts in the respective fields; visit faith communities with established programs; and seek information from individuals with disabilities. Listen genuinely to what they have to say. Observe their interactions, be aware of their needs and try to meet them, show respect and reverence for these individuals, be available to them and ask first "What can I do with you?" as opposed to "What can I do for you?"
One of the most difficult aspects of integrating people, who do not have disabilities, and people with disabilities is making both groups feel comfortable around each other, and to accept people who are different from themselves. There are ways, though, to make people with disabilities feel welcome and not to feel threatened by the people around them. First of all, remember that the person with a disability is a person; a disability need not be ignored or denied between friends; be yourself when you meet them; talk about the same things you would with anyone else; help them only when they request it, offer help, but wait for their request before giving it; be patient, let the person with a disability set his/her own pace in walking or talking; don't be afraid to laugh with them; don't stop and stare when you see a person with a handicap you do not know, they deserve the same courtesy any other person should receive; don't be over-protective or over solicitous; don't make up your mind ahead of time about the person with the handicap; don't offer pity or charity, they want to be treated as an equal; the abilities, talents, and problems of people with disabilities are just as diverse as those of people who do not have a disability.
It is not enough merely to affirm the rights of people with disabilities. We must actively work to make them real in the fabric of modern society. All faith communities must work to increase the public's sensitivity toward the needs of people with disabilities and support their rightful demand for justice. People with disabilities are a forgotten population in America, and they are crying out for love and acceptance from anybody who will take the time to listen to them. It is time for faith communities to hear those cries and extend their arms of love and acceptance towards the people with disabilities of this country.
E. What are the spiritual needs of the parents of children with special needs?
Parents of children with special needs have the following spiritual needs:
' Help to see how the hand of God is present in their lives.
' Help to see how God's plan is at work in their lives.
' To give meaning to the consequences of having a child with a lifelong disability.
' Help to see how God is available to them to handle their sense of loss, grief, anger and the lack of acceptance of their child's problems.
' The comfort of a faith community in providing emotional support .
' The understanding and acceptance of their religious and faith community as they contend with the unique and lifelong needs of their target children.
' The prayers and spiritual support of their fellow church goers.
' A sense of humor and the comfort of faith as they deal with lifelong crises.
' The open hearts of their church community in developing special services for the children and in incorporating these services into the life of the church.
' The support of fellow believers in providing lifelong support in terms of advocating for the education, employment, and housing of the handicapped.
' The support of fellow believers to reduce discrimination, lack of information, and ignorance concerning the people with special needs
' The church (or synagogue) to provide a spiritual basis with which they can come to a full acceptance of their state in life.
F. What are the lifelong spiritual needs of children with developmental disabilities?
Children with disabilities need:
' Understanding of who God is and the role God plays in their lives.
' Understanding of God's plan for each person on earth and how their ''special needs'' are a sign of their unique role.
' Growth in the knowledge of God in developing a spiritual life.
' Full acceptance by their church (or synagogue) so that they can participate in the liturgy and religious ceremonies.
' Education and information on the teachings and beliefs of a specific church.
' Preparation and training to receive the ritualistic rights or sacraments of their religion, e.g., baptism, holy communion, confirmation, reconciliation or the rites of circumcision, bar mitzpha, witnessing, receiving Christ, etc.
' Advocacy on the part of their fellow believers so that they receive fair treatment in - education, employment, and housing.
' The understanding and acceptance of their fellow believers.
' Compassion, support, and openness from their fellow believers to experience a sense of oneness, community, and fellowship in their church community.
' A witness of the active hand of God in theirs and others lives to give meaning to their unique contributions.
G. What activities can those in organized religions develop for the parents and families of children with special needs?
' Religious education and church (synagogue)-related programming:
Coordinate efforts to open the church's doors to children and adults with disabilities. Consistent efforts to provide education for the disabled in the teachings of the church and to incorporate them into the faith structure of the community are important. Appropriate ramping and physical changes can make the church accessible to the physically disabled. Church schools need to address the religious education of the mentally and learning disabled. Churches could sponsor social programs, groups, or clubs for its members with special needs.
' Parent-to-parent contact at the point of diagnosis:
Organize programs for parents to reach out to other parents and provide emotional support for each other. When parents are informed of their child's disability and its lifelong impact, it is a crisis in their life. There is a need to create a parent-to-parent network through churches with ongoing coordination and interagency cooperation. This field is ripe for apostolic work within the churches to overcome the emotional hurdle of this diagnosis and to keep parents active and not fearful of being unaccepted by the church community.
' Emotional support groups:
Parents, family members, and the children with developmental disabilities are in need of a great deal of emotional support--lifelong emotional support--because the disabilities are lifelong in nature; the crises and emotional strain has no end. New loss experiences need to be addressed, yet there are very few lifelong support programs for these families or their children. Such support groups could be housed in churches.
' Individual and family counseling:
Because of the emotional strain that having a child with a developmental disability places on a family, there is often a need for both individual and family counseling. Churches could provide social services with low-cost, sliding fees to the families using professionals from the membership.
' Support for the parents of the children with special needs:
Marriage encounter and other marital enrichment programs are sponsored by the church to enrich married life. These programs can be given specifically for the parents of children with special needs. These marriages need support and encouragement, and the churches can take a leadership role in this regard.
' Education:
The schools sponsored by churches can provide appropriate and accessible educational alternatives for children with developmental disabilities. Many parents want their children to go to church-related schools, but the schools are not accessible to the handicapped. In fact, it appears that they are discouraged from placing their children into such schools. Because their children have special needs, these parents must forego that choice for their children. This lack of choice needs to be addressed by the churches serving these families.
' Advocacy for people with disabilities:
Federal money for services for people with disabilities has been cut, but there is an increasing need for coordination of advocacy groups to unify their voice. An agency is needed to lead and coordinate such a process. This appears to be an excellent avenue for the churches to take. The church has no vested interest in the outcome of such advocacy, yet they can provide clerical and administrative support in assisting the advocacy of people with disabilities in the community.
' Social and leisure opportunities:
A lifelong social network of leisure and recreational opportunities for people with developmental disabilities is needed. These clubs and activities would generate enthusiasm throughout the year. Social and recreational programming and the use of existing church facilities for this purpose is a fine way to take a leadership role in the advocacy of people with disabilities.
' Meeting space:
Many of the advocacy organizations on the local level are in need of permanent meeting and office space. They have small budgets and few personnel. There is a above. Again, the churches' size and geographic coverage make excellent potential support for the advocacy groups in this regard.
' Fund raising and grant support:
The amount of federal and state money for people with developmental disabilities is limited. There is always a need to go to the private sector to gain financial support. Fund raising and grant writing are needs of advocacy groups that the churches could support.
' Employment of people with disabilities:
The employment of people with disabilities is a major need in the community. These people with able minds and bodies need assistance to find employment opportunities that will be supportive, and give them a sense of satisfaction, self-esteem, and success. Churches have an excellent opportunity to take a leadership role in this area.
' Housing:
There is a growing need for group housing facilities for those with developmental disabilities. The required number of beds will triple in the next twenty years. In order to meet this need, private funding will be needed. The federal government is cutting back its support for such facilities. Churches with surplus property could deed this property to parent groups for the establishment of group living facilities and apartments. Churches could also assist in rezoning efforts needed for such development. If churches took a leadership role today in helping parents to organize themselves they could create trust funds and financial planning for future group homes and supervised apartments. This is a dire need. Preventive action needs to be taken now. The churches are in an appropriate leadership and supportive role to lead the parents and the community to lifelong care for their children. Parents need to become involved while their children are still young.
H. What negative consequences can come of parents who are not supported by their churches (synagogues) as they deal with their children's disabilities?
Parents who have felt unsupported in their church (synagogue) may have:
' Left their churches completely.
' Joined churches that did offer them support.
' Lost their faith and belief in God or in God's mercy and kindness.
' Become embittered, angry, and hostile toward the church, its believers, and God.
' Became alienated and disappointed with their religion.
' Turned off from God, accepting the hardship of their children's problems as a sign of God's rejection of them.
' Never been able to fully resolve their grief, loss, and lack of acceptance of their child's problems.
' Become incapable of sharing the ''good news'' of God's salvation to their children.
' Brought their children with disabilities up without recognizing the need for God and the church in their lives.
' Become alienated from their old friends, and social support systems in their former churches.
I. What negative consequences can come of children with disabilities who are not being provided supportive services by the church (synagogue)?
Children with special needs who have not been given supportive services by a church (synagogue) may have:
' Never been given a chance to comprehend the mystery and blessing of God's role in their lives.
' Not been able to recognize the impact of faith and trust in God as tools to accept their condition in life.
' Not been given a community of believers with which they could identify.
' Felt alienated and unwanted in the church.
' Been denied their birth right to worship and partake in the churches' ordained functions.
' Been isolated from the worship, sacraments, rituals, and observances of the church.
' Been discriminated against in their right to practice the religion of choice of their families due to their disability.
' Been denied the opportunity to have as normal a life as possible in the community of the church.
' Become dependent on secular agencies and services to gain a sense of brotherhood and fellowship denied them in the church.
' Become non-believers or non-religious due to the absence of active witness in their lives.
J. What steps can be taken to address the lifelong spiritual needs of children with disabilities?
Step 1: In order to address the spiritual need of your target child, assess your own spiritual needs. Answer the following questions in your journal:
' What is the status of my relationship with God, my church, and my fellow believers as a result of the diagnosis of my child with a disability?
' How well has my church, the clergy, and members responded to my needs and those of my family as a result of the diagnosis?
' What services and support did my church offer me?
' How strong is my faith in God as I face the lifelong disability of my child?
' What role did my faith in God and participation in my church play in my resolving my grief, anger, and lack of acceptance of my child's diagnosis?
' What are my spiritual needs today? How well are my needs being met in my current church? What alternatives do I have?
' How accepting, well-informed, and supportive is my church of the unique problems and concerns I face with my target child?
' What in my spiritual life gives me comfort as I deal with ignorance, discrimination, and lack of knowledge concerning my own and my target child's needs?
' How do I explain ''God's hand at work'' in the life of my target child?
' How comforting is God's message to me and my family as we proceed with lifelong efforts to deal with my target child's issues?
Step 2: Once you have identified your level of spiritual needs, assess the level of spiritual need of your target child. Answer the following questions in your journal:
A. What is my child's understanding of who God is and what the church is?
B. Who is teaching my child about God? What tools or aids do they use to provide this training?
C. How comfortable am I in discussing God and religious issues with my child?
D. How do I handle my child's questions about our participation or lack of participation in a church?
E. How helpful has a spiritual focus been in assisting my child to cope with his disability and the reactions of others to him?
F. How useful has my church's religious education program been to my child's growth in faith?
G. How willing am I to have my target child partake of the sacraments and/or rituals of my religion?
H. How important is it to me that my child be reared in the same religion I was? How willing am I to change religions in order for my child's needs to be met?
I. How am I handling the introduction to the teachings of my religion to my target child? How important is it to me that my target child be a church member?
J. What makes me feel uncomfortable about my bringing my child to my church? How would I like to change this?
Step 3: Once you have looked at your child's spiritual needs, look at your church (or synagogue). How could it better respond to your's and your child's needs? Answer the following questions in your journal:
B. What special or modified services does your church (or synagogue) offer to those with disabilities and their families?
C. What is the attitude of your church leaders and the members toward the needs, wants, and rights of people with developmental disabilities?
D. How welcome do you feel in the church community?
E. Have you made requests of the church concerning your target child that went unnoticed or were ignored?
F. What special efforts and kindness from your church and its members have come your way since your child was diagnosed?
G. How comfortable do you feel coming to your church in regard to education? employment? housing? social life? recreation? religious education? spirituality? discrimination? other needs of your target child?
H. How does your church help groups of parents, families, and adults with disabilities?
I. How active do you feel you need to be in your church before you would feel comfortable asking for help with issues concerning your target child?
J. How willing an advocate is your church regarding people with disabilities?
K. What is active or absent in the way your church addresses you and your target child's needs?
Step 4: After you have assessed your own, your target child's, and your church's needs, how can you meet the lifelong spiritual needs of your target child? Develop the following plan in your journal:
Plan for My Child's Lifelong Spirituality Needs
$ I will rear my child in the following church:
$ I will instruct my child in the following religious beliefs:
$ I will have my child partake of the following sacraments or rituals of my church:
$ I will enroll my child in religious education classes at this age:
$ I will ensure that special classes exist in the program for children like mine:
$ I will approach my church to get involved in the following activities concerning people with disabilities:
$ I will provide my child with the following role model of spirituality in my own life:
$ I will teach my child the following things about God to give my child a healthy acceptance of the disability:
$ I will supplement the church's efforts by:
Step 5: If you have problems developing or implementing the action plan in Step 4, go back to Step 1 and begin again.
*Note: Chapter 6 Sections A-D were written by Connie Messina, Ph.D. as a prelude to the development of a Special Needs Pilot Project at Idlewild Baptist Church in Tampa, Florida which opened in April 1997
Chapter Notes:
1. Ficke, Robert C. Digest of Data on Persons with Disabilities. Washington, D.C.: National Institute on Disability and Rehabilitation Research, 1991, p.7.
2. US Bureau of the Census Statistical Abstract of the United States (115th Edition), 1995.Washington, D.C.: 1995, p.8.
3. Tampa Tribune, October 30, 1996 Greater Tampa, p.1.
4. Pierce, Ann C., editor, Florida Statistical Abstract (29th Edition), 1995. Gainesville, Florida: University Press of Florida, 1995, p.576.
5. Private communication: T. Russell Hughes, Associate Bible Teaching-Reaching Department. Florida Baptist Convention, Jacksonville, Florida.
6. Von Reynolds, C. (1996) "Praising the Lord", Special Education Today. 2(1), p.32
7. Rife, Janet Miller, Ginny Thornburgh. From Barriers to Bridges. United States: National Organization on Disability, 1996, p.5.
8. Nabi, Gene. Ministering to Persons with Mental Retardation and Their Families.
Nashville, Tennessee: Convention Press, 1985.
Chapter Bibliography:
Banks, James A. Cherry A. McGee, Multicultural Education Issues and Perspectives. Needham, MA: Simon and Schuster, 1989.
Bibles and Other Scriptures, Liturgies and Hymnals in Special Media. Washington, D.C.: Library of Congress, 1993.
Cassette Books, Library Services for the Blind and Physically Handicapped. Washington, D.C.: Library of Congress, 1989.
Dwyer, Kathy, editor, Common Threads. Missoula, MT: Rural Institute on Disabilities, 1992.
Ensign, Arselia, Is Your Church Accessible? Lansing, MI: PAM Assistance Centre, 1991.
Ficke, Robert C. Digest of Data on Persons With Disabilities. Washington, D.C., National Institute on Disability and Rehabilitation Research, 1991.
Hesselgrave, David J., Communicating Christ Cross-Culturally. Grand Rapids, Michigan: Zondervan Publishing House, 1991.
McNair, Jeff, The Local Church As An Agent of Natural Supports To Individuals With Developmental Disabilities. San Bernardino, California: California State University Press, 1993.
Nabi, Gene, Ministering to Persons with Mental Retardation and Their Families. Nashville, Tennessee: Convention Press, 1985.
O'Reilly, Robert C., School Law for 1990's. Westport, CT: Greenwood Press, 1992.
Pearl, Patricia, Helping Children Through Books: A Selected Book List. Portland, Oregon: Church and Synagogue Library Association, 1990.
Pierce, Ann C., Florida Statistical Abstract (29th Edition) 1995. Gainesville, Florida: University Press of Florida, 1995.
Rife, Janet Miller, Ginny Thornburgh, From Barriers to Bridges. United States: National Organization on Disabilities, 1996.
Skow-Anderson, Laurie, I Live In God's Love. Minneapolis, Minn.: Augsburg Publishing House, 1986.
United States Bureau of the Census Statistical Abstract of the United States (115th Edition), 1995. Washington, D.C., 1995.
Van Rheenen, Gailyn, Missions. Grand Rapids, Michigan: Zondervan Publishing House, 1996.
Von Reynolds, C., (1996) "Praising the Lord", Special Education Today, 2(1).