On Target: Disability and Health in New York State, Volume 7

Be "Fit for Life" - Creating Healthy Lifestyles for People With Disabilities

Achieving overall wellness - physical, emotional, physiological - means a happier and longer life. In the last issue of "On Target," the benefits of physical fitness, and how to stay fit, were explored. In this issue, other elements of wellness are presented.

Taking the first step toward a healthier life can be a challenge. You may need to overcome some barriers. In some cases, you'll need to work with your health care providers and other community members to ensure accessibility to a healthy lifestyle. That means you may have to pursue accommodations in programs you want to join. Or, you may need to work with your employer to make necessary changes in your work environment. Or, you might need to become a community advocate - writing letters or meeting with community leaders to educate them about how all residents are entitled to good health and access to wellness programs.

In this issue, you will find a variety of materials, organizations and services that can help guide you in making wellness decisions. Working toward a healthy lifestyle can be rewarding. Results come in small steps, so take the first step now, toward a healthy lifestyle.

Physical activity can be part of everyone's life, regardless of physical limitations. For ideas on becoming more physically active, see the brochure, "Fit for Life."

Health and Wellness: What Works for You

Many thanks to everyone who answered the survey on health and wellness featured in the last issue of "On Target." Your input will be helpful in creating messages that promote healthy lifestyles to people with disabilities.

We have received 80 responses to date. More than half of respondents said that they engage in activities that increase or maintain strength (57%), or increase their heart rate (53%). These rates are much higher than those cited in the recent U.S. Surgeon General's report. That report noted that only 15% of adults engage in physical activity three times a week for 20 minutes.

Survey respondents unanimously said they participated in health and wellness activities to get an overall feeling of good health. Other important reasons were to reduce stress and tension; increase independence; or achieve weight maintenance or loss. People said that time, cost, energy and lack of information on what is available are chief reasons why they weren't more physically active.

So, what's the best way to get people with disabilities started in healthy recreation? Respondents suggested we educate people with disabilities about options for recreation; increase recreation opportunities in the community for people with disabilities; and educate people with disailities about the health benefits of physical activity.

You Are What You Eat - So Eat Well!

Eating healthy has its rewards: fewer diseases; more energy; a longer life; improved sense of well being; decreased obesity.

Your daily diet should include a variety of foods. Use the USDA Food Pyramid, pictured here, as a guide. "Try to eat servings of five fruits and vegetables each day," said Peg Perry, nutrition director at Helen Hayes Hospital. "Use fats, oils and sweets sparingly."

Ms. Perry encourages getting enough physical activity to burn off the calories you eat. If you have a disability that limits your physical activity, you may not burn off enough calories and gain weight, she said. Obesity, combined with a fatty diet, increases your risk for heart disease, high blood pressure, stroke, diabetes and colon cancer.

How many calories, then, are too much? Ms. Perry said that your nutritionist can calculate your ideal calorie intake and weight with a basic energy expenditure formula. The formula calculates your body height and weight, how active you are and has a built-in factor to cover special conditions, such as a missing limb.

Do you have questions about using the Food Pyramid or about how to eat more healthy? If so, contact your nutritionist or Peg Perry at 914-947-3000.

Cooking Healthy, Eating Well Tapes Available From ICD

"Chew I," "Chew II" and "Chew III," videos on cooking healthier, with a "pinch" of simple exercise, such as stretching, are available, free of charge, from the International Center for the Disabled (ICD), 3 Dag Hammarskjold Plaza, NY, NY 10017, or by calling (212)-759-0822.

Learn about why it might be healthier to eat certain foods. For instance, do you know that foods high in protein, such as chicken and skim milk, might help cut down on the number and frequency of skin breakdowns (pressure sores). Plus, they're low in fat. A fatty diet contributes to health problems, including cancer and obesity.

Discover how adaptive cooking utensils can make cooking easier.

The videos feature four personable hosts (all with different disabilities) who demonstrate food preparation and cooking as they pound, dip, cut and arrange foods with adaptive cutting boards, knives and scrub brushes, and talk about how they have benefitted from eating healthier.

The videos were produced with funding from the state Health Department's Healthy Heart Program.

Expanding Your Opportunities With State Office of Advocate For Persons with Disabilities

Do you want to donate, exchange or find an assistive device, like a voice-activated computer or something as basic as a modified toothbrush? Looking for a program to improve job skills or obtain health or medical services? Are you the parent of a child with disabilities seeking resources and referrals?

These are a small sampling of the kinds of assistance you can find through the NYS Office of Advocate for Persons with Disabilities, which can be reached at 1-800-522-4369 (both voice/TTY).

The Office of Advocate's four main areas are: expanding implementation of the Americans with Disabilities Act and related state and federal civil rights legislation; expanding its resources and referrals capacity; helping increase access to technology-related assistance; and offering technical and support services to people with disabilities.

The Office of Advocate administers the federally funded Technology Related Assistance for Individuals with Disabilities (TRAID) project, which provides information and referral on assistive technology. An assistive technology device is a piece of equipment that maintains or improves functional abilities. There are 13 TRAID centers throughout the state that demonstrate assistive devices and offer referrals.

Some of the Office of Advocate's services include:

  • Electronic Bulletin Board (EBB) system - If you have a computer and modem, you can contact people, check calendars of events, read newsletters (such as this one),check databases, post messages or hold "group" discussions, and keep current with news that's important to people with disabilities. To access the BBS, call 1- 800-943-2323. Users in the Albany area and those out of state can call 518-473-0320. Call your local library if you need to borrow a modem and software package to access EBB.
  • Self-Advocacy Training Information and Referral Network (SATIRN II) - this is a computerized database containing more than 8,500 services, programs, organizations, etc. Call the Office of Advocate for information on how to use SATIRN II.

Winners on Wheels - 'WOW's Kids

Making crafts, playing games and working toward achievement awards are activities 'WOW'ing kids, ages 7 to 11, who use wheelchairs.

The five Winners on Wheels (WOW) chapters in New York State are looking for members and adults interested in starting new chapters. There are 58 WOW chapters and 450 members throughout the United States.

A nonprofit, volunteer organization, WOW was established in 1991 to provide challenging and esteem-building opportunities for youth who use wheelchairs. The national office in Fresno, CA, coordinates the development of chapters by recruiting volunteer leaders, and providing information, education and program materials. Thanks to the generosity of sponsors, members, called "winners," and their leaders receive free t-shirts and backpacks, take field trips, and enjoy award ceremonies, holiday parties and special projects.

WOW founder and wheelchair user Marilyn Hamilton said, "I know the obstacles and tremendous challenges these children face. Yet I also know that there is no problem that can not be turned into an opportunity when there is someone telling you: 'You can do it!'"

For more information on starting a chapter, call 800-WOW-TALK. To join a chapter, call the people listed in the information box.

New York State WOW Chapters
Albany
Chris St. Amour (518) 829-7366
Dana Berti (518) 370-5163
Middleport
Kitty Lester (716) 735-3450
Holley Wollschleger (716) 323-1348
Nassau County
Thomas Herbert (516) 378-2000 Ext. 300
Catherine Serpico (516) 378-2000
Utica
Bob Sullivan (315) 732-7040
Barbara Tine (516) 724-8389
West Haverstraw
Nancy Brown (914) 947-3000 Ext. 3164
Erin Coyle (914) 255-0661

Pressure Sore Prevention Tips

Pressure sores are common problems for people who use wheelchairs. The following are effective prevention tips:

  • Inspect your skin each day.
  • Change your position frequently.
  • Maintain a straight sitting position.
  • Replace worn cushions, and keep your wheelchair in good condition.
  • Transfer carefully.
  • Eat a well-balanced diet.
  • Drink plenty of liquids.

More information is included in "Are You at Risk for Pressure Sores?", available free from: Publications, Box 2000, Albany, NY 12220.

Art Helps Life Skills

Kent Sheeler, who has Multiple Sclerosis, could barely move his arms to mix the paints at his first art lesson five years ago. He had never painted before, but was interested, and the initial classes, sponsored by the Glens Falls Independent Living Center, were free.

"I've taken it every year since. It's great," said Sheeler, an oils painter.

The weekly classes for oils, watercolors, acrylic and drawing have attracted more than 50 people of all disabilities, including Parkinson's and Alzheimer's diseases, glaucoma and arthritis. Their ages range from the mid-30s into the 90s.

Classes are held at art teacher Chris Walton's Glens Falls studio, which is accessible. The first six weeks of classes are paid by seed money from Warren County. Afterwards, one-on-one instruction is $5 per class.

But the actual skill of learning to paint isn't all that artist Sheeler and Chris Walton are raving about. Sheeler said painting has improved his large motor skills, and has resulted in less depression and fewer hospitalizations.

Walton, also a nurse, sees people overcoming the intimidation of trying something new, on top of trying it with a physical challenge. Many students have no formal art training.

"We adapt to their situation. We might 'pad' a brush by wrapping something around it for better grip, or lengthen or shorten a brush. Some people paint flat on a table to rest their arms," said Walton. She also gives private lessons and teaches at Prospect Child and Family Center, the local CP Center; and at actor Paul Newman's summer camp, the Double H Hole in the Woods at Lake Luzerne.

"I work on self-esteem," Walton said. "My goal is to give them an option they can do anytime. I encourage them, for instance, to bring their art supplies to their doctors' appointments and make the time go by productively."

For more information, contact the Glens Falls Independent Living Center at 518-792-3537; and TDD/TTY, 518-792-0505.

New Publications and Services

The following are not-for-profit organizations, services and materials you might find useful in your quest for a healthier lifestyle. They are cited only as examples of what's available. In printing them, the state Department of Health is NOT endorsing them, nor can it be held liable for any problems related to the product or service. For more resources, contact your Independent Living Center or other programs designed for people with disabilities.

Book Catalog Offered:

Hundreds of books and videos covering a variety of issues (i.e; health, relationships, physical therapy, physical fitness, employment) are available through the Disability Bookshop Catalog. For a copy, write:

P.O. Box 129
Vancouver, WA 98666-0129
(360) 694-2462

or e-mail, 73743.2634@compuserve.com.

Fit for Life Brochure:

Looking for a way to become more physically active? For a free copy of Fit for Life write:

Publications
Box 2000
Albany, NY 12211

This brochure contains sports and fitness ideas, the health benefits of physical fitness, and ideas on getting fit from people with disabilities who have successfully made physical activity part of their lives.

Discussion Forum:

The New York State Health Department's Disability Health Program has an electronic discussion forum for people with spinal cord injury (listserv) on the DOH healthcom network. SCIPIN-L provides a helpful, supportive environment in which to discuss health and wellness issues, including preventing secondary conditions; access to services; and consumer and professional education needs. Internet users can subscribe by sending an e-mail message to: LISTSERV@health.state.ny.us. In the message body, type: subscribe sciplin-l and your name. If you have a PC and a modem, the health department has free software that will provide you with an e-mail account and enable you to subscribe. Contact DOH's HELPDESK for more information at 1-800-638-3808.

Disability-Related Websites, Links:

The following is a selection of Internet addresses on disabilities and wellness issues:

Many sites will provide links to other sites with disability-related information.

  • The Western New York Disabilities Forum shares information related to physical, mental and emotional disabilities. This site strives to inform people with disabling conditions, and their families, friends and caregivers, as well as non-disabled community members.
  • Disabled Sports USA (DS/USA) strives to ensure that people with disabilities of all ages have access to sports, recreation, and physical education programs, from preschool through college, to elite sports levels. DS/USA has 83 community-based chapters in 40 states, including the three New York State chapters of ASPIRE (Athletic Sports Program Involving Recreation and Exercise), providing year-round sports, recreation and social activity for people with disabilities. They are ASPIRE, Inc. (Upstate), P.O. Box. 2042, Albany, NY 12220; Mid-Hudson ASPIRE, Home Route 1, Box 114, Greenwood Lake, NY 10925; or ASPIRE (Downstate), 50 Maple Place, Manhasset, NY 11030.
  • National Sports Center for the Disabled provides updated information (including teaching skills, techniques and adaptive equipment)on innovative outdoor recreation for children and adults with disabilities.
  • The National Center for Accessibility (NCA) provides technical assistance to organizations that are designing and retrofitting leisure areas and programs for accessibility. The NCA is a program of Indiana University's Department of Recreation, in cooperation with the U.S. National Park Service's Office on Accessibility.
  • National Institute on Disability and Rehabilitation Research: Sponsored by the National Institute on Disability and Rehabilitation Research, this site contains the American with Disabilities Act of 1990 (ADA) and ADA regulations and technical assistance manuals prepared by the U.S. Equal Employment Opportunity Commission (EEOC) and U.S. Department of Justice.

DOH TDD:

To enhance communications with hearing impaired people, the state Health Department, like many other state agencies, has installed a telecommunications device for the deaf (TDD).

"No one's physical challenges should be a barrier in seeking health-related information," said State Health Commissioner Barbara A. DeBuono, M.D. "There are an estimated 1.5 million people in New York State who are either deaf or hard of hearing, and this device will provide them with better access to Health Department information and services."

People with hearing impairments may call the Health Department at 518-486-9003,Monday through Friday, 7:30 a.m. to 5:30 p.m. The DOH's state-of-the-art TDD Model 2730 is compatible with older models, as well as their predecessor, the teletypewriter. The New York State operator will forward calls to the Department of Health's TDD number, as well.

The ADA: How it Helps You

The Americans with Disabilities Act (ADA) of 1990 is a comprehensive federal law that protects the civil rights of persons with disabilities.

It prohibits discrimination against people with disabilities in employment, transportation, public accommodation, telecommunications (i.e., telecommunications devices for the deaf, TDD's), and activities of state and local government.

ADA information and assistance, and copies of ADA documents supplied by the Equal Employment Opportunity Commission and the Department of Justice are available in standard and/or large print, audio cassette, Braille, and computer disk. For a copy, contact the EEOC at 800-669- 3362 (voice ) or 800-800-3302 (TDD).

ILC's Support Groups in Amsterdam

Several new support groups and a self advocacy group have started up at the Independent Living Center of Amsterdam. The groups' schedules follow:

  • Two support groups for people of all disabilities meet for one hour at 7:30 p.m. every Thursday at St. John's-St Mark's Church, Canajoharie; and also at 7 p.m. the third Thursday of the month at Christ Lutheran Church, Johnstown.
  • A support group for persons with hearing impairments meets at 7 p.m. the third Thursday of the month at the Gloversville Senior Center.
  • The Traumatic Brain Injury (TBI) support group meets at 7 p.m. the second Monday of the month at St. Mary's Hospital, Amsterdam.
  • The Fulton County Multiple Sclerosis support group meets at 7 p.m. the third Monday of the month at the Family Counseling Center, 11 Broadway, Gloversville.
  • In addition, a self advocacy group for people with disabilities is currently being established.

Interested people should contact the Amsterdam ILC at (518) 842-3561 or use the TDD at (518) 842-3593.

HAI Brings Hope, Inspiration Through Art and Theater

In New York City, people with various disabilities can enjoy live performances and other cultural experiences, thanks to the volunteer organization, Hospital Audiences, Inc.(HAI).

HAI volunteers arrange for performers to visit nursing homes, hospitals and shelters. They also take people with disabilities to live arts events, such as to museums where people with sight impairments can touch the works or to Broadway plays where they can use special headsets or a companion can describe scenes. HAI also runs workshops in painting, sculpture and dance.

HAI has found that experiencing art is socializing and humanizing, and that enjoying and participating in live arts helps with healing and improves the person's quality of life.

HAI also publishes, "Access for All: A Guide for People with Disabilities to New York City Cultural Institutions," ($5). For further information, or to order the guide, write: HAI, 220 West 42nd St., NY, NY 10036, or call 212-575-7676.

Job Training Available

The Office of Vocational and Educational Services for Individuals with Disabilities (VESID) helps people with disabilities become independent and find employment.

To be eligible for VESID, you must have a physical, mental, emotional or learning disability that interferes with your ability to work. There must be a reasonable chance that you will become gainfully employed if you receive rehabilitative services.

There are 15 regional VESID offices. VESID also sponsors private, community-based facilities called Independent Living Centers. They are non-residential, nonmedical service centers whose staff members include people with disabilities. Services are varied and may include job training, support groups, and leisure and social activities.

Check your telephone book for the VESID office or ILC nearest you.

Monthly GYN/OB Clinic Now Open

A monthly GYN/OB clinic for women with disabilities has recently opened at the Center Health Care, located at the Center for the Disabled, 314 South Manning Blvd., Albany. Hours are 9 a.m. to noon every fourth Wednesday. Additional clinic days will be added when necessary. The clinic is part of the new Women's Health Center of Albany Medical Center.

"We have developed a full range of services to better serve the complex problems of women with disabilities," said Amy Kennedy, Center Health Care director. "We are all aware of the difficulties these women have and how often these problems go unserved. At the clinic, we will be able to address such health concerns as abnormal PAP smears; amenorrhea; pain; hormone replacement; menstrual disorders; biopsy; contraception; and early pregnancy." Ms. Kennedy said Medicaid and nearly all insurance plans are accepted. To arrange an appointment, new patients can call (518) 437-5721; current Center Health Care patients, (518) 437-5732.

On Target is also available on audio cassette. For a copy, contact:

Mary Burt
Editor
Bureau of Community Relations
New York State Department of Health
1084 Corning Tower
Albany, NY 12237
(518) 474-5370.