NOTE:  Some HDSA Chapters have special camps for children with HD. Check with your local chapter.  For information on starting a HD Camp in your area, see HD Support Information http://clix.to/HDSupportInfo

====================================================

Ah, summer camp. The mosquitoes, the swim races, the friendships, the bug juice, the postcards home. What child wouldn't benefit from the fun and structured freedom camps provide? Children with special needs certainly aren't an exception. But the prospect can seem daunting to parents and kids alike - how can you be sure that your child will get the attention he needs? Will he be able to participate fully? What about the other kids? Will your child make friends? Will they understand?

The good news is that there are more camp choices now than at any other time for kids with special needs. From highly specialized camps to mainstream camps that accommodate kids with special needs, there are options for every child. With careful consideration of what will benefit your child most, along with thorough research, you should be able to find the right camp for your child.

Types of Camps
When it comes to camps, children with special needs actually have as many choices as children who have no such needs. The Americans with Disabilities Act (ADA) requires all camps to make reasonable accommodations (such as the installation of wheelchair-accessible ramps) so that children with special needs can attend. Mainstream camps that have never had a child with special needs attend before may now be on your list of possibilities.

Inclusionary camps do just what their name implies: they include children with special needs in their groups of children with regular needs. These camps may have started out serving only a mainstream population of kids, but they have gradually changed as the needs of the families they serve have changed.

There are also camps designed just for kids with special needs, including kids who have learning or behavioral problems, kids with specific chronic illnesses, and kids with mental or physical impairments. Many of these camps accept kids with a variety of needs, but some camps only accept kids with specific problems (such as camps for kids with diabetes, cancer, speech or hearing impairment, or epilepsy).

Within all of these categories, you'll have even more choices to consider in terms of duration, philosophy, and cost. There are nonprofit and for-profit camps, religious camps, camps run by national organizations, private camps, day camps, camps that run weekend sessions, and sleepover camps that accept kids for the entire summer.

Benefits of Camp
Whether your child goes to a sleepover or day camp, an inclusionary camp, a camp for kids with a specific disability, or a more general special-needs camp, the benefits are often the same as they would be for any child:

• increased confidence and independence
• activity and exercise
• the opportunity to interact with other kids
• positive role modeling by adults
• a chance for you to have a much-needed break

Special-needs camps give children the opportunity to be around other kids who are like them, an opportunity they may not often have. Christina Myers, 15, spent 3 weeks at a camp for kids with special needs and 1 week at a mainstream camp where she was the only child with a disability (Christina has cerebral palsy). One benefit of the special-needs camp was to give Christina a rare opportunity to be around other kids like her, according to Jean Myers, Christina's mother. "She loves going away, she meets up with her friends. There's not a whole lot of time where she gets out with disabled children," Myers says.

"I think the greatest benefit is really going and being in a supportive environment with your peers," agrees Ann Dolloff, extension specialist for the New Hampshire 4-H Camps. "It's an intense experience. From that intensity comes friendship, as well as adult role modeling and relationship building. That's true whether it's 5 days or 40 days."

Independence is another benefit that camp can provide. For example, the mainstream camp gave Christina the chance to be out in the woods for a week without her parents, doctors, or physical therapist. "She loved it," Myers says. "One of my goals was to get her to be independent and get her to do more things herself, for example to dress herself, or how to ask her friends to help. The kids work together - that's been really good for Christina."

Learning that their peers or other adults can help them is valuable for kids with special needs. "Children learn flexibility in how people take care of them - they learn that people can do things differently and they'll still be OK," Dolloff says. "It also teaches kids to be assertive in problem-solving and communicating needs."

And don't overlook the physical benefits of increased activity that camp provides. Many children with disabilities or chronic illnesses are sedentary and do not participate in the sports or recreational activities that their peers do. They therefore miss out on the social and health benefits that exercise brings. Christina has become increasingly active since she began attending camp, where she started swimming, wheelchair racing, dancing, and playing tennis and golf. This gave her immediate health benefits in terms of improved cardiovascular fitness, but also provided her with recreational options that will carry over into her adult life.

In addition, many camps combine learning environments with these physical activities, giving children with behavioral or learning problems the chance to develop, or catch up on, needed skills during the summer.

What to Look for in a Camp
"The first thing you should do is look at your child objectively. In looking at camps, you have to look at the experiences your child's had so far. Has your child ever been away? Has your child been to weekend respite? What experiences has your child had that might help prepare him for this summer experience?" advises Gary Shulman, program director of Resources for Children With Special Needs, a New York City referral and advocacy center for New York-based families with a child who has any special need or disability.

Dolloff agrees. "Parents need to determine what their child needs. Do they need to be with kids who don't have special needs and have 'typical' behavior modeled? Or will they be safer in a special-needs camp?" she says. "There's no right or wrong choice, but you need to establish what you want for your child."

A good way to start your camp search is to make several lists: a list of goals, a list of caretaking priorities, and a list of other requirements (such as cost). Your goal should be to establish the basic parameters of what you're looking for: day or residential, special needs or inclusionary, etc.

Once you've established a location and duration and have started to collect information about possible camps, Shulman says there are a variety of questions you should ask about each one, including:

• How long are the sessions?
• What's the cost? Are scholarships available?
• What's the staffing ratio?
• Do staff members have a background working with kids with disabilities? How old are the counselors and what type of certification do they have?
• What's the turnover? Do kids and staff come back? ("If there isn't a high ratio of children who return to the program, that should be a big red light," Shulman says.)
• What's the camp's philosophy? Does it fit with your goals for your child? Is it inclusive?
• What's the camp's transportation system like?

You should also include questions specific to your child's needs on this list, such as:

• If physical accessibility is an issue, what's the layout of the camp? What provisions has the camp made (or can it make) for wheelchairs or crutches?
• If your child needs a special diet, can the camp provide appropriate meals? If not, can you provide food for your child?
• What kind of medical staff is available and during what hours? Can the staff administer any medications your child needs?
• How does the camp staff handle behavioral problems?

You should also make sure that the camp's facilities and activities are appropriate for your child's functioning level. Shulman says this isn't always as clear as it seems. "Sometimes camps will say, 'We work with children who have disabilities'," he says, "but they're just trying to broaden the base of kids who come. For example, they say they work with kids who have learning disabilities and then you visit and most of the kids have mental retardation." This kind of camp would be inappropriate if your child has AD/HD, for example.

You should involve your child in this research process - what does he want to get out of summer camp? What are his preferences? Are there any activities he really wants to try?

Does he have classmates or friends who have gone to a summer camp? Making sure your child plays a role in this process will help ensure he gets the most out of the camp you select.

Choosing a Camp
Once you've narrowed down your list of choices, how do you pick the one that's right for your child? Shulman and Dolloff recommend visits to the camp, both for you and for your child. "Even if it means doing your research a year before, visit the program, or at least ask if they have a video," Shulman says.

"I think a site visit is imperative," Dolloff says. "You can talk to the director, visit the site, and get that comprehensive picture of where your child will be."

Both Dolloff and Shulman say that the only way to get a true feel for the camp is for you and your child to visit it together. "You'll both just know if it's right for you," Dolloff says. This is especially important if your child is going to a mainstream camp where they haven't dealt with many children with special needs, because it gives you the opportunity to point out changes they might need to make and gauge the reaction of the camp's staff to your requests.

"Attitude is everything," Dolloff says. "Accessibility is important, but you can make things accessible."

If you can't visit the camp, interview the director and some staff members to get a feel for the place. Ask them to describe the physical layout and the kinds of activities your child will do. You should ask to speak with other families whose children have attended to see what their experiences were like. In fact, Myers recommends word-of-mouth as the most effective way to find out what you need to know about each camp.

It's your responsibility to get as much information as you need to make a decision. "Parents need to ask questions to address their specific concerns. For example, how is the infirmary staffed? What is the availability of trained staff? If a child has behavior problems, what is the training and experience of the available staff to help? If the child has an ambulation problem, what are the distances they will be expected to tackle each day?" Dolloff advises.

If the idea of camp is a bit overwhelming to you and your child, try starting small. Myers began her daughter's camp experience by taking her to weekend sessions at a special-needs camp an hour from their home. "That's how we started her - each weekend is different. One weekend's a sports weekend; one's a dance weekend. We sent her for a couple of weekends so she could get used to the place and the people and see what she liked," Myers says. "Once she became familiar with camp surroundings, that really helped make her more comfortable. And I got to know the staff." Only when Christina was fully comfortable did Myers think of sending her to a more extended session of sleep-away camp.

Tips for Parents
Do your research. There are many places to get information on camps. The Additional Resources tab on the right of your screen lists organizations that can help. One of them, the American Camping Association (ACA), has an online listing of accredited camps that is broken down by types of camps.

You can also call local chapters of major disability organizations to find out what camps are available in your area. Many organizations publish lists of camps and can connect you with camp directors and former campers.

In addition, Shulman recommends that parents try to locate a special-needs camp fair in your area. Many of these are held in January or February, which means that you need to start your camp search early.

Look for funding. The cost of camps ranges widely, with some high-end special-needs camps costing as much as $7,000 for a 3-week session. You can help fund your child's camp experience by applying for scholarships, but Shulman cautions that you should do this from December through March, because by April or May, the money is gone. He recommends that you try charitable organizations and fraternal organizations (such as the Lions, Kiwanis, and Rotary Clubs, all of which sponsor special-needs camps). And depending on your child's specific disability, he may be eligible for financial aid from your state. Other sources of scholarships include religious or ethnic charities.

One thing to bear in mind: you usually need to find a camp that's willing to take your child first - most of these organizations send the scholarship money to the camp in the child's name, not to parents directly.

Know your rights. You have the legal right to demand certain accommodations. "I know of a camp that had to hire two interpreters for two hearing-impaired children at an incredible cost to the camp," Dolloff says. "Parents do have the right to advocate for the accommodations they think are necessary."

Reviewed by: Steven Bachrach, MD
Date reviewed: December 2000

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/