Ingredients for Success

Highlights from the July 15, 2014 Huffington Post article entitled "7 Ways Congregations Can Embrace People with Disabilities".

In a major study conducted by the University of Kentucky and Vanderbilt University, only 43% of the parents of children with special needs surveyed described their religious community as supportive and more than a third changed their place of worship because their child had not been included or welcomed.

The seven ways include:

• Communication - Provide a resouce person to listen to the needs of the person with a disability and their family to learn how they can work together toward full inclusion.
• Accessiblity - To the extent possible, meet the physical needs of the individual.
• Support - Provide an aide or peer assistant to participate in religious education, small group ministry, etc.
• Leadership - Faith communities where leaders are committed to including people with disabilities were more welcoming, offered greater opportunities for people to share their gifts and were more physically accessible.
• Participation - Invite people with disabilities to sit on boards and committees and to take more visible roles in congregational life.
• Education - Congregations that educate their members on disability issues are more welcoming and better able to integrate people with special needs into the life of the community.
• Love - Parents of children with special needs who experienced love and acceptance reported their congregations were sources of great strength and support.

With respect,

Mark Bernstein

Congregational Life Consultant, Central East Regional Group

UUA Liaison to Equual Access

Blazing Trails

Samuel G. Howe

It will come as no surprise that many Unitarian Universalists have been instrumental throughout history in advancing the cause of people with varying abilities. Some of the names are better known: Dorothea Dix and Samuel G. Howe who, among other accomplishments, established the Perkins School for the Blind in Boston and was recognized as the country’s leading expert on the subject.  Others are lesser known, but no less important in raising consciousness, improving services, and gaining greater acceptance of people with disabilities in society.

While some of his techniques may have been suspect (he was a great proponent of bloodletting to cure ills, for example), Benjamin Rush was a pioneer in the study and treatment of mental illness.  Rebuffed when he protested the inhuman treatment of people with mental illness at Pennsylvania Hospital, he obtained state funding to create a ward for the “insane” at that facility and began a practice that revolutionized the way we think of people with mental illness.  In 1812, he wrote the book Medical Inquiries and Observations, Upon the Diseases of the Mind, which was a standard reference for seventy years and earned him the title of “the father of American psychiatry.”

Dr. Martha May Eliot was a leader in the development of health services for mothers and children.  While on staff at the Department of Pediatrics at Yale, Dr. Eliot helped to develop the Division of Child Hygiene and collaborated in the drafting of the first Maternity and Infancy Act which required states to extend and improve services for mothers and children and for “handicapped” children.  In her report to Congress in the mid-1950’s, Dr. Eliot identified children with mental retardation as a program priority.  Largely through her initiatives, by 1955, services for people with mental retardation were a priority within the federal government.  Since 1964, the American Public Health Association has awarded the Martha May Eliot Award to deserving individuals who have provided extraordinary health services to mothers and children.

T. Berry Brazelton, M.D. has a long and distinguished history in the field of primary care pediatrics and child psychiatry.  An author of more than 200 scientific papers and chapters, Dr. Brazelton has been influential in advocating the importance of early intervention to at-risk infants and their families.  Among other honors, he was appointed in 1989 to the National Commission on Children by the U.S. Congress, where he advocated for better services to disadvantaged children.  His Neonatal Behavioral Assessment Scale is used worldwide to assess the physical and neurological responses of newborns as well as their emotional well-being and individual differences.

These are just a few of the stories of Unitarian Universalists living out our faith in word and in deed…and helping to make the world a better place for people of all abilities.

Embracing the Child in Our Beloved Communities

Through the financial support of the UUA, the author and educator Sally Patton has been offering workshops on creating welcoming ministries for all families that want to attend our Unitarian Universalist Congregations. Entitled Involve, the workshop is designed to train religious educators, ministers and lay leaders to minister to children with different ways of learning, being and knowing and insure their successful inclusion into congregational life. So far this year, Sally has presented her workshop in the San Francisco area and in Westchester County, north of New York City. On May 19th, Sally will be at the Unitarian Universalist Church of West Chester, a suburb of Philadelphia. For those in that area, registration will be open until May 17th. For more information, contact Mark Bernstein, CERG Growth Consultant at mbernstein@uua.org. For more information about Sally, log on to her website at www.embracechildspirit.org.

Including Complex Children By Kate Ryan

I’m reading Sally Patton’s excellent book, Welcoming Children with Special Needs: a guidebook for faith communities, and as good as the book is, I can’t help but think that my kids aren’t in there. ‘My’ kids being the kids I work with, the fragile, very-medically-involved, severely-delayed kids. So I thought I would write a little primer on how to welcome them.

Life with a child with special needs, as anyone knows, can be very difficult. But some disabilities are more difficult than others. Rare syndromes, diseases and chromosomal abnormalities often lead to children who are severely disabled and medically fragile. We’ll call them ‘complex’ kids. Below, I offer some suggestions on how to welcome complex kids to your church and make their families feel at home.

First of all, don’t be afraid. These kids can look somewhat frightening at first. They may be very small for their age and very skinny, or have faces and bodies that do not look like the faces and bodies you are used to. They may make strange noises or cries. They may be hooked up to all sorts of fancy machines. But unless their parents/caregivers are telling you to call 911, the kid is probably fine, and you should welcome them just as you would any other family, with a generous heart and an open mind.

Staring is rude, we all know that, but so is making comments like ‘he’s small for his age, isn’t he?’ The family has heard all of it before. Inquire gently about the child’s condition on a need-to-know basis, and trust that the family will tell you more if they need to. Don’t expect the parents to be a talking encyclopedia – when they say their child has Cornelia de Lange syndrome, just Google it later and spend your time connecting with the family, not questioning.

Offer assistance, trying to anticipate what might be helpful and remember to ask before making assumptions about what the child or the parent needs. It can be awkward to always have to ask, and many parents get used to doing everything themselves and not asking for help. Taking care of complex children is a 24-hour job, and going to church should provide a break for the parents, and a chance to replenish their soul.

Start with the physical needs. If your church isn’t accessible, figure out how to carry a wheelchair up the steps. Provide a place in the pews for a wheelchair or for a child to sit on the floor, if that is what s/he prefers. And this may seem small, but it is actually a big one – provide a place to change the diaper of a person older than two. Many times families have to resort to the back of their car, which can be very hard to maneuver in.

Children with complex needs may eat a chopped or pureed diet. They often need to be fed, or may rely on a feeding tube. It is not hard to feed anybody, so at coffee hour it would be nice to do so if the parent is okay with it.

One thing that I have noticed about ‘regular’ kids is that they can go anywhere without much equipment. Complex children do not have this advantage. They often tote around huge bags filled with emergency supplies. Ask if it would be helpful if the church could set aside a spare cupboard or closet, where the child could put a box with some supplies that the parent provides so that they do not have to bring everything to church and back every Sunday.

Ask the parents what they want their child to get out of church. Some children might be best sitting in the sanctuary with their parents for the service, if they truly would not be able to participate in the children’s activities. Others could participate with a helper.

Accommodations for a complex child in RE would be the same as for any other child with special needs, and I refer to Pattons’ book, specifically the chapter on intellectual disabilities and physical disabilities.

Some complex children understand everything you say. Others are so brain-damaged that they understand little. All, however, will understand tone of voice (unless they cannot hear) and attitudes towards them, as will the family. Families with complex children are used to being stared at and treated rudely, so it is important to treat them with dignity and respect, and acknowledge that they are doing the best for their child and that they know what is best. Ask them the best way to communicate with their child, whether through pictures, signs or talking. All children communicate in some way, even if it is just through smiles and laughter.

Families of children with lissencephaly, mitochrondial disease, osteogenesis imperfecta, deaf-blindness and a host of other conditions live in a world that is very hard for the ordinary person to imagine. It is a world filled with small sorrows and small, hard-won victories. Where a good day means one with just five seizures, not ten, and where a smile is worth more than a pot of gold. By welcoming these families and their children, UU’s can lessen their sorrows and increase their joys.

Complex Children E-Magazine offers more information.