Press Room

UCP of Maine has been serving the community since 1954 and we take pride in what we do each day. We serve over 1500 children, teens, and adults in the state of Maine with disabilities. It’s easy to get involved and we are always welcoming the media to help distribute the good services we provide every day. If you are interested in helping out and becoming a part of our organization, please contact:


Mary Berube
Director of Operations
UCP of Maine
700 Mt. Hope Avenue Suite 320
Bangor, ME 04401
207.941.2952 Ex. 326

UCP of Maine’s Children’s Behavioral Health Home and Case Management Expand to Belfast

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.

Bowdoin College Men’s Ice Hockey Humanitarian Award Finalist Donation to UCP of Maine

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.”

5 Things I Want You to Know on Cerebral Palsy Awareness Day

March 25 is National Cerebral  Palsy Awareness Day. I’ve been thinking a lot about what that means as somebody who has had to be aware of CP every day of my life for the past 25 years. How do I talk about awareness, and what does it mean to me?

There isn’t a day of my life, an hour, a minute, or even a second where I am not aware of CP. I am a full-time wheelchair user, and I need help to do a lot of the things most people take for granted. I am aware of CP in the way it affects my life from the moment I wake up to the moment I go to bed. I am aware of it every time I’m late because a caregiver missed their shift, every time I can’t use Metro because the elevators are out, and every time I can’t get into a building because there is no ramp. I’m aware of it every time I look at my amazing friends who come into my life because of our shared experience of disability. I’m aware of it every time my siblings tell me that having me in their life has encouraged them to think differently about what it means to be a person with a disability. I’m aware of it every time I have the opportunity to talk to someone younger than me with cerebral palsy, and let them know even though life with CP can be complicated, it can also be amazing.

So for me, on CP Awareness Day, the question becomes, “what do I want the rest of the world to be aware of when it comes to CP?” “What do I want everyone else to know about the condition that has affected my life?” I’ve thought a lot about this, and I’ve come up with five things I feel are really important for everyone to understand on CP Awareness Day.

  1. For me personally, living with CP is hard, but I wouldn’t change it for anything: I’m not going to pretend that being a person with a disability doesn’t come with any challenges, of course it does, especially since we still live in a world that is far from fully accessible, but the truth is even though it’s difficult, I’m super proud to be who I am! My disability is part of me, I can’t change that, and I honestly don’t think I would ever want to. Disability changes the way I experience the world around me. I may have to go in different entrances and put up with a lot of the frustrations that come with needing help to do basic things like take a shower or get in bed, but having CP has also given me a lot of good things too. Because of my disability, I have met some of my closest friends, and had some of my coolest life experiences. I can honestly say I don’t think I ever would have gone to Leeds, England to study disability studies had it not been for my CP. I experience the world differently, but it gives me a unique perspective, and over the years I’ve learned to be proud to be different. I would never say having CP is easy, but it’s an important part of who I am.
  2. My disability is an important part of my identity, but it doesn’t completely define me: As I said before I’m super proud to be a person with a disability, and it has definitely shaped my life experiences, but it doesn’t completely define me. I have hobbies, interests, and talents that have absolutely nothing to do with my cerebral palsy. I love to write, music is one of my favorite things in the world, and I’m a huge fan of a good selfie. In high school I was a radio DJ, I like to ski, and I’m really into fashion. I certainly have a passion for disability rights, but that’s just one facet of who I am. CP is just one of the many things that make me, well, me. I don’t want every conversation I ever have to revolve around my disability. Ask me about my favorite songs, what I like to watch on Netflix, or my favorite type of sushi! I want you to acknowledge my disability, and understand that it’s an important part of me, but don’t make it everything!
  3. Cerebral palsy is not one-size-fits-all: I have CP and I am a full-time wheelchair user. One of my coworkers, and good friend, walks without any mobility device. CP looks different for everyone, and because of that no two people experience living with CP in the same way. What works for me may not work for another person with CP. It’s super important to remember this when thinking and talking about CP because one person’s experience might be vastly different from someone else’s, and it’s important to realize there’s no magic answer to questions of what’s best when it comes to living with CP, it’s really all about what works for you!
  4. Mentorship has been super important in my life: I’m the only person in my family with cerebral palsy, which means that my parents and siblings are experiencing all of the things I experience for the first time too. Sometimes they don’t know what to tell me when I experience prejudice or discrimination, or even when I just can’t figure out the best way to hold a coffee cup while driving my power chair! Some of the most important relationships I’ve had in my life have been with older people who also have CP, and other disabilities and are willing to give me advice about how to approach experiences my parents don’t understand. These are the people I went to when I wanted to go away to college, study abroad, and even start working here at UCP. I also love being a mentor. I love meeting younger kids with cerebral palsy, and other disabilities, and getting to tell them the things I wish I had heard growing up. The Internet is amazing because it gives us the ability to connect in ways we were never able to before, and it means that no one has to go through life alone.
  5. I want to change the world, not myself: Advocacy is super important in my life. I am so grateful to the advocates who came before me and fought for things like the ADA and IDEA. I feel a pang of gratitude every time I go down a ramp, use an elevator, or see an accessible restroom, but I also know the fight is far from over. I’m proud of who I am, and I want to live in a world where everyone has equal opportunities, whether or not they have a disability, and so I’m an advocate! I fight for the changes I want to see in the world, and I fight to make sure every single person has the opportunity to live a life without limits!

Tommy Hilfiger Launches Adaptive Collection for Children With Disabilities

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.

 Two children, one in a wheelchair, wearing adaptable clothing. Tommy Hilfiger // Credit: Richard Corman

Two children, one in a wheelchair, wearing adaptable clothing.
Tommy Hilfiger // Credit: Richard Corman

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 for people with disabilities


originally posted on

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.


US Housing and Urban Development (HUD) Resources for People with Disabilities – Frequently asked questions on the housing rights of people with disabilities and the responsibilities of housing providers and building and design professionals under federal law.

National Directory of State Housing Finance Agencies – Housing Finance Agencies offer individuals, families, and businesses a wide range of support and assistance. Click your state to find HFAs and organizations near you that can help you with your housing finance questions and concerns.


Home Modifications:

Home modifications are changes made to adapt living spaces to meet the needs of people with physical limitations so that they can continue to live independently and safely. These modifications may include adding assistive technology or making structural changes to a home. Modifications can range from something as simple as replacing cabinet doorknobs with pull handles to full-scale construction projects that require installing wheelchair ramps and widening doorways.


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

 Making a Home Accessible:

Making Homes Accessible: Assistive Technology and Home Modifications – This resource guide provides information about assistive technology and home modifications. The guide covers definitions; laws and guidelines; initiatives from the Assistive Technology Act grantees; advocacy, financing, modification, and research resources; accreditations; online courses; and a bibliography.


Home Wheelchair Ramp Project – Information on building your own home wheelchair ramp including safety information and ramp specifications, manuals, and videos (for the do-it-yourself types).


National Resource Center on Supportive Housing and Home Modification – The Center’s mission is to make supportive housing and home modification a more integral component of successful aging, long-term care, preventive health, and the development of elder-friendly communities. The Center offers a vision for the future as well as practical strategies and materials for policymakers, practitioners, consumers, manufacturers, suppliers, and researchers.

Owning a Home:

Homeownership has never been seriously perceived as a possible housing solution for people with disabilities. It is a problem that has developed over decades—a problem that goes beyond financial concerns to include attitudes, ignorance, myths and stereotypes about where and how people with disabilities can and should live.

Yet, for many people with disabilities, the motivation to own a home is powerful. Homeownership offers control and choice in where and how they live. It provides something of value on which to build financial stability. It is a much preferred alternative to nursing homes, institutions and other restrictive settings that are too often the only other housing options. In their own homes, people with disabilities can put down roots and carry on with their lives, secure in the knowledge that their housing needs are taken care of for the long term.

Recently, more attention has been given to people with disabilities throughout the home-buying process, and financial assistance has become more accessible to them. Down payment and closing cost assistance is vital to helping most consumers with disabilities clear a major obstacle to purchasing a home– having enough money to pay the down payment and closing costs.

Financial assistance is also necessary for people with disabilities to modify their home according to their needs. A seller may be willing to address the necessary repairs but additional accessibility modifications may be required. These modifications can be costly and generally unaffordable to people with disabilities and a low-income. With the help of HOME, CDBG, volunteers, partnerships with home improvement centers, and partnerships with other organizations or local governments, people with disabilities are able to receive the loan products and services necessary to modify their home.

Today, more people with disabilities are becoming homeowners, and more communities are starting to realize the importance of this long overlooked segment of the housing market.


Home of Your Own Guide (PDF) – A Home of Your Own Guide walks prospective home owners through the complex process of buying a home, from the initial decision to make the purchase, through the steps for acquiring a mortgage, and finally, to life as a homeowner. The new guide introduces a “person centered approach” to homeownership, which places people with disabilities at the center of the decision-making process on issues affecting their personal lives and living situations.

Winter Storm Preparedness Tips

Winter Storm Preparedness Tips

originally posted on – 


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.


Lego releases minifigure that uses a wheelchair

LEGO Confirms New Set Will Feature Wheelchair-Using Figure

      Originally reported b


     Finally, LEGO has listened to disability activists and people everywhere who have been calling for them to include representations of people with disabilities.
Images courtesy of Promobricks

This week LEGO confirmed it’s released a new set featuring a young man using a wheelchair. The new toy was spotted at the Nurumberg Toy Fair in Germany this week and also at the London Toy Fair. It’s part of a new “Fun in the Park” set, according to ToyLikeMe, a campaign working to pressure toy companies into being more inclusive. The set also appears to include a guide dog.

“It’s pretty momentous, even though it’s just a little toy,” Rebecca Atkinson, co-founder of ToyLikeMe, told The Mighty in an email. “It’s about the message behind it, which is far, far bigger than a little one-inch-tall plastic guy.”

Pictures of the plastic beanie-wearing youth in a wheelchair were posted on the Promobricks, a LEGO news blog, Facebook page and shared on a website called Bricksfans. The release of this new figure comes after many months of campaigning by ToyLikeMe, which launched a petition last year that got more than 20,000 signatures. Last Christmas, ToyLikeMe submitted designs for a disability-inclusive holiday set and campaigned for that as well.

Representatives from LEGO confirmed the existence of the wheelchair-using figure in the LEGO CITY set to the UK Press Association on Wednesday, the Daily Mail reported. The set containing the figure will go on sale in June.

This is the first LEGO mini figure with a wheelchair, although previously there was a LEGO Duplo range, a series of the toys aimed at pre-school children, that featured an elderly man in a wheelchair. That set was criticized by activists for reinforcing stereotypes about wheelchairs only being for the elderly. This new figure is a part of the LEGO line aimed at older kids.

“I’m delighted,” Atkinson told The Mighty. “I’ve worked hard to set this issue on the agenda within the toy industry and say that the cultural marginalization of 150 million disabled kids by the toy industry is not OK. I’m hopeful this is the beginning of real core brand commitment from LEGO to continue positively representing disabled children in their much loved toys.

What Can You Do to Protect Access and Independence?

What Can You Do to Protect Access and Independence?

Man transferring from his wheelchair to driver's seat of a vehicle


Complex Rehab Technology — Doesn’t Have to Be That Complex!


When it comes to paying for wheelchairs and other equipment the Centers for Medicare and Medicaid (CMS) uses a program called ‘competitive bidding’.  Over the years, we’ve worked with the disability community to ensure that the competitive bidding process does not restrict reimbursement of the equipment necessary to live daily life with a disability.

Most recently, and of immediate concern, is that now CMS wants to include all the parts of a wheelchair beyond the base frame as an accessory and apply the competitive bid pricing to those items. If this goes through it will drastically limit the payment for and access to tools and technologies that those who use, benefit and depend upon wheelchairs to live a quality of life with a disability depend on.

AND it’s set to take effect January 1, 2016.


So, What Can YOU Do?


First: Sign on to an online petition that is opposing these cuts.

Second: Congressman Zeldin of New York introduced legislation (H.R.3229) that seeks to reverse the CMS decision to restrict payment for complex wheelchair – as they call them – “accessories”.  The “accessories” category includes the customizable and individually configured components that are so crucial to a functioning chair.  This bill provides the technical correction to clarify that CMS cannot apply Medicare competitive bidding prices to accessories used with complex rehab wheelchairs.

Right now the bill has 18 cosponsors.  If we want to show that reimbursement of wheelchairs is important and that these components are NOT simple accessories but are critical components we need more Members to sign on.

Call your Member of Congress and tell them to support H.R.3229 and to SUPPORT Independence and Access for the disability community.

Call the House Switchboard at (202) 224-3121 and Ask for YOUR Member of Congress


Here are talking points to guide your call!

  • Hi, as a constituent and someone impacted by a disability I know how important reimbursement for wheelchairs is in daily life.  (Feel free to share your story)
  • I’m concerned that the language included by CMS to apply competitive bidding prices to all parts of a wheelchair beyond the frame will severely limit the ability to access a technology that is necessary for millions in their daily lives.
  • Congressman Zeldin has introduced legislation that reverses the CMS decision to restrict payment for complex wheelchair accessories.
  • Please sign on to HR. 3229.  You can reach the Congressman’s Health Staff at: or at (202) 225–3826
  • On behalf of myself and all those who would be impacted by this restriction THANK YOU.

Family Centered Care

Family Centered Care

originally published: – 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.

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.

Maine Report with Olivia McCrillis and Bonny Dodson

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maine report

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: as well as Facebook: and Twitter: @ucpofmaine.

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