Press Room | UCP of Maine

UCP of Maine is excited to announce the expansion of its Children’s Behavioral Health Home (BHH) and Case Management programs further into Waldo County, now serving Belfast and surrounding communities. These programs will allow children and families of this region to have improved access to services that address a variety of behavioral, developmental, educational, and medical needs. Jonathan Smith, UCP’s Assistant Director of Case Management and BHH Services, said of the expansion, “This move makes perfect sense for UCP and the families of the Belfast area. BHH grew out of a movement in healthcare calling for greater emphasis on wellness, collaboration, and cooperation. Any time spent in and around Belfast makes it very clear these same principles are driving forces in the region.”

UCP of Maine’s BHH program is a newer model of case management designed to help providers and families see physical and mental health as an integrated need and to empower children and families to take charge of their healthcare. Our BHH team includes case managers, a family support specialist, two clinical team leaders, a nurse care manager, and medical and psychiatric consultants. Our case managers work closely with children, their families, primary care providers, and all treatment providers to identify and address a range of needs. BHH thrives on a team approach to care and seeks to honor and develop the whole person, both mentally and physically. For children who are not eligible for BHH, or who do not want to enroll in BHH, UCP of Maine also offers Children’s Case Management. In this program, our case managers link children and families to various community resources and help them access educational, medical and psychological services so they can meet their needs and achieve their goals.

Back in February, UCP of Maine received a check donation of $500 from Bowdoin College Senior Camil Blanchet of the men’s ice hockey team. Camil had been named as one of five finalists for the 2018 Hockey Humanitarian Award. The award is presented annually to college hockey’s finest citizen, a student-athlete who makes significant contributions not only to his or her team but also to the community-at-large through leadership in volunteerism. The donation comes on behalf of the Hockey Humanitarian Award Foundation which awards the five finalists a check of $500 to donate to an organization of their choice.

Camil has taken the initiative on numerous service efforts including the recent Bowdoin College men’s ice hockey Cerebral Palsy Fundraiser Game on December 9th. The team has a personal attachment to the fight against cerebral palsy, as the team adopted Lucien Hodell in 2013 through Team Impact, a non-profit organization that connects collegiate teams with children facing adverse or life-threatening conditions. Over the past five seasons, Lucien has been a crucial member of the team as he continues his fight against CP and the team honored his efforts by wearing custom Cerebral Palsy awareness jerseys at the fundraiser game. Fans had the ability to donate to the cause by purchasing their own jersey, which was on sale at the game and throughout the remainder of their season. Camil and the team raised $1,380 with all proceeds going to UCP of Maine as well. Scott Tash, CEO for UCP of Maine recently shared “It’s individuals like Camil that give back to their local community and non-profit organizations that make receiving this donation so much more rewarding. We appreciate Camil and his teammates efforts with this wonderful donation in honor of their adopted team member Lucien Hodell.”

Originally posted by: Melissa McGlensey By Melissa McGlensey Feb 23, 2016

Now, children of all abilities can wear Tommy Hilfiger clothing.

A nonprofit organization called Runway of Dreams worked with the brand to launch an adaptive version of select styles from its children’s line, which will be on sale starting Tuesday.

Mindy Scheier, a fashion designer, founded Runway of Dreams to work with the fashion industry and adapt mainstream clothing for people with different abilities. She started the organization after her son Oliver, 11, who has a rare form of muscular dystrophy, asked her to buy him a pair of jeans.

Oliver, then 8, came home from school and said he wanted to wear jeans to school the next day because his friends were wearing them. Scheier didn’t know what to do. She knew because of his mobility issues, pants with a button and zipper would present challenges, and the jeans would hinder his ability to wear his leg braces. But it was also a priority for Scheier to allow her son he could wear the things he wanted, despite the challenges he might face.

“It was more important to me to have him walk into school with his head held high than to worry about the other things,” Scheier told The Mighty. “That was when I realized a change needed to happen. Every kid and adult in the differently-abled community deserves to wear the same clothing that everybody else does.”

Scheier got to work looking for adaptable mainstream clothing, but soon discovered not many options existed. So she began buying clothes off the rack and modifying them to suit Oliver’s needs.

She then started assembling focus groups to get a feel for what kinds of clothing needs the community as a whole had. Based on issues the people reported with most pieces of clothings — like difficulty with zippers, pull-over style sweatshirts, etc. — Scheier began developing wearable technology and designing modifications that would allow people to self-dress.

Realizing the extent of the market for this type of service, Scheier began to think about what brands would be best to pioneer the movement. Her crusade eventually led her to Tommy Hilfiger.

“They’re a brand that caters to the family unit and their clothing goes from children all the way up to adults, but also they have a very big affinity for philanthropic movements,” Scheier told The Mighty. “I felt comfortable they were going to understand.”

Based on her research, Scheier has modified the Hilfiger collection in three main ways.

The first is closures: buttons and zippers have been replaced with a special stylish magnet closure called MagnaReady®. The second is the adjustability of the clothing: pant legs, sleeves lengths and waistbands are adjustable because the sizes needed for seated comfort differ from standing. Third is the ways in which a person can get in and out of the clothing: pull-over style clothing can be difficult due to low muscle tone, limb differences or other disabilities, so the seams have been adjusted to allow for the clothing to be entered through the back rather than over the head.

All apparel is still from the mainstream Tommy Hilfiger spring collection.

“As far as I know, this will be the first mainstream, big name brand to offer an adaptable clothing collection,” Scheier told The Mighty. “This will be a huge initiative in the fashion industry that will truly be innovated by Tommy Hilfiger.”

Scheier says Runway of Dreams isn’t done yet. Her organization won’t stop until as many brands as possible are offering adaptive versions of their clothing.

For Scheier, it’s a passion project born out of love for her son. He has seen it from the beginning, with Scheier ripping apart clothes on the kitchen table, all the way through the final photo shoot for the collection, in which he’s a model.

“It’s an amazing thing for him and my other kids to witness this journey and show them that you can make a difference and if you believe in something, you can make it happen,” Scheier told The Mighty.

HOUSING

originally posted on mylifewithoutlimits.org

Adequate housing can be a major issue for people with disabilities, who can face challenges related to accessibility and discrimination. Through technology and advances in design, we now know how to design and build housing that can accommodate residents and visitors with disabilities. Architectural and related guidelines dealing with ramps, doorways, bathrooms, cabinetry and other features allow people with mobility impairments and other physical disabilities to have full access to and to function independently within modern housing. Lifts and other devices enable people to move about their homes. Computerized environmental control units allow for the operation of devices and appliances ranging from doors to kitchen stoves. Coordinated use of assistive technology and personal assistants result in levels of personal autonomy and independence undreamed of only a few years ago.

Below are links with information for owning a home, making a home accessible and more.

Home Remodeling for People with Disabilities: What You Need to Know: by Michael Sledd, originally from Expertise.com.

Winter Storm Preparedness Tips

originally posted on mylifewithoutlimits.org –  January 26, 2015 by O’Ryan Case and Guest post by Holly Colsher, from Portlight Strategies

As the Northeast braces for what is forecast to be a historic blizzard, here are some general tips for preparing for winter weather, and some specifically for people living with disabilities:

People with disabilities may want to take extra care during the cold weather season. Some disabling conditions may limit sensory abilities and the ability to maintain body heat, so be particularly vigilant about staying warm when you are out in low temperatures.

Wear multiple layers of clothing, including a scarf around your neck, a winter hat, lined boots and two pairs of socks.

If possible, wear thermal gloves underneath mittens to keep your hands warm.

It’s also a good idea to carry a cell phone.

If you travel in a wheelchair, wrap a small blanket around your legs, tucking it underneath yourself or around your sides. This will help to maintain body heat. Wheelchair users may consider purchasing pneumatic tires for better traction. Another alternative is to use standard dirt bicycle tires. Use table salt or clay cat litter to clear ramps – rock salt can poison working assistance animals and also may be slippery. Remove the tires from your wheelchair and shake debris and ice off them before placing them in your vehicle. Wipe down any metal surfaces (wheelchair tire rims, walkers, etc.) as soon as possible after returning home. This will prevent rusting.

If you are a wheelchair user and unaccustomed to heavy, strenuous wheeling, be very careful when traveling through snow. The added exertion could lead to a heart attack or stroke. Freezing rain also will stick to surfaces such as canes, walkers, forearm cuffs and wheelchairs. Use gripper driving gloves to keep your hands warm and to prevent slipping.

If you use a working assistance dog, remember that dogs also can suffer from hypothermia and frostbite. Get a dog coat to place under the harness, and consider getting boots for the paws. Also, have a blanket in your vehicle for the dog.

Additional tips for people with disabilities:

If you receive home-based care (e.g., homecare attendant, home health aide, visiting nurse service), include caregivers in developing your plan and familiarize yourself with your homecare agency’s emergency plan.

If you are blind or have a visual disability, store a talking or Braille clock or large-print timepiece with extra batteries.

If you have a pet or service animal, also plan for his or her needs (e.g., temporary relocation, transportation, etc.).

If you rely on home-delivered meals, always stock nonperishable food at home in case meal deliveries are suspended during an emergency.

Have a plan with your doctor that addresses emergency prescription refills, if possible.

If you receive dialysis or other medical treatments, find out your provider’s emergency plan, including where your back-up site is located.

If you rely on medical equipment that requires electric power, contact your medical supply company for information regarding a back-up power source such as a battery. Follow the manufacturer’s directions when installing the equipment and the battery back-up. If you use a portable generator for emergency power, follow the manufacturer’s directions for safe operation, and check with local fire and building officials for regulations governing generator and fuel use. Ask your utility company if the medical equipment qualifies you to be listed as a life-sustaining equipment customer.

If you rely on oxygen, talk to your vendor about emergency replacements.

BeReady_Winter

Family Centered Care

originally published: mylifewithoutlimits.org – Medical Director’s desk

Therapeutic interventions directed toward the individual with cerebral palsy have been intensively studied and written about. While individualized therapies can be exceedingly helpful in enhancing mobility, communication, and productivity, they may fail if the “living environment” factor is ignored. The chief and most important environmental component supporting any therapeutic intervention is the family.

If family members are to be supportive, parents as well as siblings must be healthy — both mentally and physically. A strong predictor of caregivers’ well-being is family function.1 Caregiving demands, defined as the day-to-day practical needs of the child or adolescent with a disability, challenge the physical and psychological health of caregivers. In a study comparing the health of primary caregivers of children with cerebral palsy with that of the general population, researchers in Canada found that those who care for young people with a disability experience higher levels of stress and emotional difficulties as well as a greater number of chronic physical problems, such as headaches, stomach/intestinal ulcers, and musculoskeletal pain.2

In addition to the level of routine dependent needs (such as gastrostomy tube feedings, heavy equipment transport, or frequent medical appointments), a child’s challenging behaviors, if they exist, have been consistently shown to be a major source of parental stress.3 Although such difficult behaviors may be typically age-appropriate, they can be difficult for caregivers to interpret because of the child’s disability. For example, does a toddler with CP scream when buckled into a car seat because she is a toddler disliking being restrained or because confinement with spastic muscles is painful? Most likely the screaming is due simply to being a toddler rather than to pain. If that is true, the behavior needs to be dealt with in the most effective way as one would with any toddler – namely, ignoring it. It is the need for such constant judgment calls that can be very stressful for primary caregivers. Blackman and colleagues found that infants and toddlers with cerebral palsy and other disabilities may manifest the usual colic, temper tantrums, and irregular sleep patterns, but these typical age-related problems tend to be more severe and last longer than in other children.4

In differentiating the effect on a family of a teenager passing through adolescence with and without CP, Magill-Evans and co-researchers found more similarities than differences.5 Parents of children with CP should expect all of the usual, age-appropriate adolescent behavioral challenges. However, CP may complicate interpretation of an adolescent’s behavior. A knowledgeable counselor or therapist can be helpful in sorting this out and identifying effective behavior management strategies, when needed.

Navigating the complex health, educational, and social support systems are challenging and often change over time (e.g. from early intervention services to public schools, or from pediatric to adult healthcare). A parent may need to reduce work hours to be a “case-manager,” reducing family financial resources and placing health insurance coverage at risk – and thus, contributing to even more stress.

Family-centered care is both a philosophy and an approach to service delivery that is considered to be a best practice in early intervention, healthcare, and pediatric rehabilitation settings.6 It is, however, far from universally practiced. The concept is simple. The family is central in a child’s life and parents have the greatest insight into a child’s abilities and needs. The cornerstones of successful family-centered care are: open information exchange, respect and support for the family’s wishes and preferences, and a partnership between the family and service providers (rather than a dictatorial, “take-it-or-leave-it” approach). Not only does a family-centered approach to care result in higher satisfaction among parents, it improves outcomes for the child, parents, and entire family.6

In contrast to the simply technical or short-term rehabilitation interventions that are focused primarily on the child, family-centered care should explore strategies for prevention and reduction of family stress. This can be done through joint exploration of the sources of the stress and specific ways in which to deal with them (such as enlisting professionals who are well-versed in caring for individuals with disabilities to help with a child’s difficult behavior and/or identifying appropriate social, financial, religious, or physical support systems).1

Whether you are a parent, family member, primary caregiver, or individual with CP, you can and should request a family-centered approach to health, educational, and therapeutic services. The CanChild Centre for Childhood Disability Research at McMaster University in Hamilton, Ontario (Canada) has excellent information and resources on family-centered care. I particularly recommend the fact sheet entitled, “10 Things You Can Do to Be Family-Centered.” I believe you will find the information to be helpful and something you may want to share with your child’s services providers.

You can view CanChild’s compilation of information on family-centered care by going to their website.  Click on the “Children & Families” tab; then select “Family-Centered Service.”

By introducing the concept of family-centered care into your service system, you may enhance the care experience not only for your own child and family, but for other children and families as well.

References
1. Raina P, O’Donnell M, Rosenbaum, P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115:e626-e636.
2. Brehaut JC, Kohen DE, Parminder R, et al. The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics 2004;114, e182-e191.
3. Ketelaar M, Voman MJM, Gorter JW, et al. Stress in parents of children with cerebral palsy: What sources of stress are we talking about? Child: Care, Health and Development 2008;34:825-829.
4. Blackman, J A, Cobb LS. A comparison of parents’ perceptions of common behavioral problems in developmentally at-risk and normal children. Children’s Health Care 1989;18:108-113, 1989.
5. Magill-Evans J, Darrah J, Pain K, et al. Are families with adolescents and young adults with cerebral palsy the same as other families? Developmental Medicine and Child Neurology 2001;43:466-472.
6. King S, Teplicky R, King G, et al. Family-centered service for children with cerebral palsy and their families: A review of the literature. Seminars in Pediatric Neurology2004;11:78-86.

UCP of Maine recently participated in a television public affairs class project: The Maine Report developed by the New England School of Communications (NESCom) at Husson University.

Jeffrey Hope, program Director at NESCom, offered UCP of Maine a chance to participate in this news magazine style show produced by his students.  The format is similar in style to Bill Green’s Maine.  It was a great opportunity to gain exposure with a younger demographic, practice our media skills, end up with a great piece about UCP of Maine all while helping students at NESCom/Husson University.

This unique opportunity allowed UCP of Maine to work with Olivia McCrillis, a senior at Husson University, on her televised project.  The show filmed on November 23, 2015 and went very well!

We would like to thank Mr. Hope and Ms. McCrillis for doing a fantastic job and now allowing us to use the finish product as we see fit.  The video will be on our website:  www.ucpofmaine.org/stories/blog as well as Facebook: www.facebook.com/ucpofmaine and Twitter: @ucpofmaine.

For more information on Husson University or NESCom click on www.husson.edu.  To learn more about the programs and services offered by UCP of Maine visit www.ucpofmaine.org or call us 207.941.2952.