Disability Concerns Consultants
The questions can be overwhelming:
- Help! I need curriculum help for children and adults with developmental disabilities.
- Can you give me information about accessibility audits/checklists/surveys?
- My presbytery meets in a church that's not accessible. Don't they get it?
- How can our church begin a ministry with persons who are deaf?
- What do I say to a child who asks, "Why me?"
Four consultants hired by the office of Social Welfare Organizations/PHEWA are available to help the Church with questions like these.
To contact the consultants directly, the best procedure is via email. The consultants work in a variety of professional capacities and are glad to be of assistance. However, they can better serve you if given some time to focus on your question and gather information prior to calling you back or responding via email. Please leave a detailed message concerning your question or concern and how best to contact you. You may also call PHEWA at (800) 728-7228 x5800.
The Rev. Raymond Meester
Consultant for Hearing
Heritage Presbyterian Church
880 South 35th Street
Lincoln, NE 68510-3499
(402) 477-3401 / TTY (402) 477-3429
Ray is the pastor of Heritage Presbyterian Church, whose active deaf ministry includes an interpreted worship service and Sunday School classes for adults and children who are deaf. One adult who is deaf currently serves on the session. Ray’s parents and four uncles and aunts were deaf, enabling him to be conversant in American Sign Language. In 2000, the Louisville Institute awarded him a 12-week sabbatical grant to study deaf ministry from a deaf cultural perspective. He has served on the board of the Nebraska Commission for the Deaf and Hard of Hearing, was a founding member of Presbyterians for Disability Concerns (PDC) and is a past moderator of the PDC, a network of PHEWA.
The Rev. Sue Montgomery
Consultant for Mobility/Accessibility
P.O. Box 16
Knox, PA 16232
Sue Sterling Montgomery is the pastor of the Nickleville Presbyterian Church, Emlenton, Pa Pennsylvania. She has also served as a chaplain at Polk Center, a residential facility for persons with intellectual disabilities since 1983. Sue has served on local and national boards addressing advocacy issues for persons with disabilities. She’s no stranger to the barriers persons with mobility disabilities face. To address more than just the architectural barriers, Sue has done extensive study in the areas of theology, language and philosophical approaches to life with a disability. Sue is an avid handcyclist who enjoys riding her 27 speed handcycle on the many rails to trails systems along the rivers of Pennsylvania. She received the Women of Faith Award from the Women’s Ministries Program Area of PC(USA) for her work with persons with disabilities.
The Rev. Rick Roderick
Consultant for Visual Disabilities
2215 Westridge Rd.
Louisville, KY 40242
(502) 423-8195 or (502) 429-4460
Rick worked in the blindness field for 27 years. He began as a rehabilitation counselor and continued as an assistive technology specialist. He taught primarily internet and Braille note taking devices. He retired from the Kentucky Office for the Blind in 2007. Rick still does internet research in the blindness field and is active on several mailing lists dealing with these issues.
Rick produces Braille for the PC(USA), primarily for the Office of the General Assembly. He has served on the Leadership Team for Presbyterians for Disability Concerns (PDC) and consults with the church on accessible technology. He enjoys leading worship when requested and participated in the leadership of the 213th General Assembly. He lives with his wife, Carol, their daughter, Marissa, and his current Seeing Eye dog, Quattro.
Mr. Milton Tyree
Consultant for Developmental Disabilities
P.O. Box 22638
Louisville, KY 40252
Milton Tyree is a member of Springdale Presbyterian Church in Louisville, Ky. He has had numerous opportunities through the years to develop personal relationships with people who have disabilities and their family members. Milton has more than 25 years of experience in the design, development and provision of supports and services that promote participation of people with disabilities with valued aspects of everyday life. He has worked in a number of capacities including teaching, curriculum development, consulting and program administration. His real passion is in the area of personal advocacy. Milton currently works for the Human Development Institute at the University of Kentucky.
Later this morning, I get to assist a friend with his Hart Supported Living application (http://chfs.ky.gov/dail/HartSupportedLiving.htm). "Tim" rents his own place, works part-time at the university, and wants to stay involved in his community, even though this requires a ramping up of already extensive people and technological supports because of the progressive nature of his neurological condition. Jane Hart, a pioneering advocate for people having intellectual disabilities and the person for whom the Hart Supported Living initiative is named, had the universal nagging parental question, along with her husband, Ken: "What will happen to our daughter when we're gone?" Their daughter, "Hillary," is my age, 58. By the time Jane and Ken passed away, both within the same year, "Hillary" was established in her own home, in the town where she grew up, financially secure with public and family resources (because of knowledgable guidance arranging a special needs trust), with the personal support of a family selected guardian, and a family selected voluntary team of people to oversee their daughter's finances and supports. "Bob" lived with his folks 22 years ago when he first came to work in my department. They had the "what will happen" question too. And even though he lived with his parents for many years following his first job at our institute, he already had moved to a home shared with two other men, when his primary care giver, his mom, died several summers ago. Bob has also seen the increasing impact of his physical and cognitive disability. His support needs are now pretty much around the clock. But, he also has a team of people that voluntarily meet with him, his dad and paid service providers to think about what's good and what needs to be better. Bob's formal supports are primarily provided through a state SCL Medicaid waiver (http://chfs.ky.gov/dms/scl.htm), which over time is becoming less regimented, more personalized, flexible, and more like Hart Supported Living. Neither of these KY initiatives are perfect. Far from it! The dollars are limited. One has a waiting list and the other is competitive. The needs of families are immense and options few, especially for aging caregivers. However, personalized, socially integrated ways have the potential for people otherwise isolated to be known and contribute as community members. Being established within one's community has many benefits for everyone, including personal safety. These approaches also allow a greater possibility for the key ingredient of personalized recruiting, screening, selecting and training the right support people. It's all very complicated. Believe me; I know. Nonetheless, this is the response and direction I'd like to see expanded publicly, privately and through the church. All states have initiatives like Kentucky's, and some are much further along. I'll be pleased to help people research and connect with possibilities. Milt Tyree (firstname.lastname@example.org)
I quite agree with Betty Barclay's comment. Since my mother died in 2002 I have been the guardian for my brother now 43, who has Down Syndrome, and finding facilities that can provide long-term care now that he has developed dementia and we can no longer care for him in the home has been very grueling. It would be a much needed undertaking of the church to develop facitilities that can address the growing needs of the developmentally disabled as they mature. What would it take for my husband and I to become involved with PADD? D'Jaris Canty Wallace
IN REVIEWING ALL THE MISSION CONCERNS, I DO NOT SEE ANYWHERE ANY INFORMATION INVOLVING PROVIDING HOMES FOR ADULTS WITH DISABILITIES. MANY OF THESE ADULTS LIVE WITH AGING PARENTS WHO HAVE CONCERNS ABOUT WHAT WILL HAPPEN TO THEIR ADULT WITH DEV. DISABILITIES WHEN THEY CAN NO LONGER TAKE CARE OF THEM OR WHEN THEY DIE. TRUE THERE ARE STATE PROVIDED HOMES, ETC. BUT THERE ARE LONG WAITING LISTS AND MANY PARENTS WOULD LIKE FOR THEIR LOVED ONE TO BE IN A CHRISTIAN HOME WHERE THERE IS LOVE AND COMPASSION SHOWN. I WOULD LIKE TO SEE THE CHURCH WIDE PRESBYTERIAN GEN. ASSEMBLY EXHIBIT SOME INTEREST AND PLANS TO DEVELOP THESE HOMES THROUGHOUT THE US AND WORLD. I AM ON THE BOARD WHICH IS PRESBYTERIAN AGENCY FOR THE DEVELOPMENTALLY DISABLED (PADD) WHICH HAS ONE HOME FOR ADULT WOMEN PROVIDED. THIS IS ONLY THE TIP OF THE ICEBERG. THIS IS A VERY IMPORTANT SITUATION WHICH IS LAGGING IN CHRUCH WIDE INTEREST. THANK YOU FOR ANY COMMENTS. BETTY LBARCLAY
Yes. Often the community of faith sees the parents as the ones to put in place what's needed, rather than responding as a community to needs expressed by the parents and son/daughter who has Down syndrome. Parents rightfully have a great deal to ad to the conversation. But it certainly would be helpful if the larger questions came from the community. e.g., "What needs to be in place so that Bill can be actively involved in our ministries and fullness of congregational life (worship, youth group, our softball team, Habitat House crew…)? Then ideas and plans are developed by the community devoting time to know Bill, his interests and passions in life -- including (but not exclusively) Bill and his folks. Sadly, this is a refection of our society's typically poor response to the real needs of people with Down syndrome to belong, contribute, learn and serve as citizens in neighborhoods, schools, jobs and communities of faith -- the same places where most of us want to belong, contribute, learn and serve. The good news is that much is known about proceeding in a positive way. If you'd like to send a private e-mail to me using the red "Email" link next to my picture above, and provide the name of your congregation, I'll be glad to follow-up.
As a parent of a 17 year old with Down Syndrome, I support this idea of more inclusivity. It is hard for church to be a place to draw close to Christ for parents when continually needing to advocate for their child within the congregation.