Information and Referral
Cerebral Palsy
Over our 70-year history serving Michiganders with disabilities, MI-UCP has developed a network of subject matter experts that’s second to none. So please feel free to reach out with your questions.
Regardless of whether MI-UCP offers the specific assistance you need, we will do our best to refer you to the best people and organizations we know. Please understand your search may require several steps and polite persistence on your part.
Take the first step and ask us, your inquiry helps you keep in touch with our network, along with the latest information on disabilities and treatments.
To learn more, please email infoandreferrals@mi-ucp.org
DETROIT ADDS DISABLED RESIDENTS, HOME HEALTH CARE PROVIDERS TO LIST OF GROUPS ELIGIBLE FOR VACCINATIONS:
CP Research
The Cerebral Palsy Alliance of Australia publishes a weekly comprehensive bulletin summarizing CP research studies around the world. Bulletins can be downloaded from their website or you can subscribe to have it emailed to you.
The Cerebral Palsy International Research Foundation is a not for profit 501(c)3 organization dedicated to funding research and educational activities directly relevant to discovering the cause, cure and evidence based care for those with cerebral palsy and related developmental disabilities.
University of MI CP Research Registry
The Department of Physical Medicine and Rehabilitation at the University of Michigan introduces the first-of-its-kind in the state of Michigan the Cerebral Palsy Research Consortium of Michigan (CPRCoM) research registry. This is the best way to become informed about CP Research studies in Michigan. 734-936-6023
U of MI Research Studies: Research Studies at U of M 2014
Adults with cerebral palsy, ages 18-35: We are studying how a surgical procedure called a rhizotomy has affected people as they age. You can participate in the study even if you haven’t had the surgery! We are looking for adults with CP to answer questions about pain, fatigue, and function. The survey is online, and can be completed from home in about 30 minutes. You’ll receive $5.00 for your time. If interested or for more information:
Contact the researchers at 734-764-5217 or PMR-CPresearch@med.umich.edu
Researchers are looking for individuals with cerebral palsy age 8 years and up for a very unique study. This study is exploring how a person can control a computer and even take tests to show their capabilities, by using ONLY their brain waves – no talking and no hands! If interested or for more information :
Contact the researchers at 734-936-7178 or umdbi-recruit@umich.edu
Teens and young adults , ages 13-29 years, with cerebral palsy are invited to take part in this study. Participants will complete standard paper/pencil or computer tests, so researchers can measure thinking and motivational factors. The study will take 3 hours and participants will receive $50 for their participation. If interested or for more information :
Contact the researchers at 734-936-6023 or PMR-UMACAL@med.umich.edu
Researchers are interested in learning more about how children with cerebral palsy remember information. We invite children, ages 6-16 years, to take part in this study and try computerized tests of working memory. The study will take approximately 3 hours and participants will receive $50 for their time and effort. If interested or for more information :
Contact the researchers at 734-936-6023 or PMR-UMACAL@med.umich.edu
ADULTS WITH CP UPPER LIMB MOVEMENT AND POSTURE STUDY
The Motor Control Lab in collaboration with the Department of Physical Medicine and Rehabilitation focuses on understanding motor coordination across the lifespan.
The ULTrA Program: More information at: www.motorcontrol.umich.edu/ultra
Sensorimotor Training and Assessment in Individuals with Hemiplegic Pediatric Onset Disability; the ULTrA Program
Current funding: Department of Education – National Institute on Disability and Rehabilitation Research #H133G050151, PI: Susan Brown, Ph.D.
Congenital Brachial Plexus Palsy (CBPP) is an injury to the peripheral brachial nerve plexus caused by traction applied on the spinal nerve roots during delivery. Individuals with CBPP can have impaired upper limb movement due, in part, to muscle weakness. Few studies exist which have examined these deficits from a sensorimotor perspective. This study examines proprioceptive abilities using a position matching task. Increased understanding of this population’s proprioceptive ability will drive the development of new and more effective therapy treatments in the traditional clinical environment or in-home intervention programs for individuals with CBPP.
The objective of this study is to determine the effectiveness of a task-specific training program (ULTrA Program) on upper limb function. The idea to be tested is that a home-based upper limb training program will lead to improved arm and hand function in adults with hemiplegic cerebral palsy. Participants receive individualized instruction on the task specific intervention training protocol (ULTrA program). The sessions are 5 times/week for 8 weeks. Each training session lasts approximately 40 minutes. An innovative aspect of this intervention is that, twice a week, each participant is joined “virtually” and observed during the training session online. Compensation ranges from $20 for a single testing session to $260 for full participation in the intervention. Funding for this project is through the National Institute on Disability and Rehabilitation Research (NIDRR) (HUM00000277).
Individuals interested in participating in the ULTrA program should be:
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Adults between the ages of 16-80 with hemiplegic cerebral palsyultra_goble.jpg
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Independent community dwellers
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Cognitive and English skills necessary to understand the training program
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Adequate upper limb range of motion and muscle strength to perform reaching movements
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Adequate ability to partially open and close the affected hand
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Willing to participate in an 8 week training session
Origins, Wellness, and Life History in CP (OWL) http://www.epi.msu.edu/cpon/owl.html
Funded by NIH PI: Nigel Paneth, M.D. Michigan State University Co-investigators: Ed Hurvitz, M.D. University of Michigan; Nancy Dodge, M.D. Helen DeVos Children’s Hospital
OWL scientists hope to understand more about very early brain damage that causes CP and how it could be prevented. We will study pregnancy and birth histories in families with children affected by CP and families with children who do not have CP.
We will examine very early blood samples that are routinely collected and stored with every birth in Michigan. These newborn blood spots, along with saliva samples from parents and children, contain information that may give us clues to what might cause CP.
With participant permission OWL will…
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Interview mothers about pregnancy, health and family history.
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Test stored newborn blood spots and mothers’ pregnancy blood samples, and review medical records.
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Collect saliva samples from mother, father and child to test family genetic variations.
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Collect short questionnaires with information on child health, movement and communication skills.
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OWL provides $75 after completion of study activities to help reimburse any costs of participation, such as travel and babysitting.
Ann Arbor Recruitment Coordinator:
Suzette VanderBeek, M.P.H. University of Michigan
(734) 936-7190
Cell phone: (734) 536-0372
Learn The Signs. Act Early (Centers for Disease Conrtol)
This is a new campaign from the CDC to help parents and professionals to improve early identification of children with autism and other developmental disabilities so children and their families can get the services and support they need. According to the CDC:
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1 in 4 children ages 0-5 are at moderate or high risk for developmental, behavioral or social delay
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About 1 in 6 children aged 3 – 17 has a developmental disability
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The CDC reports that less than 50% of pediatricians use valid and reliable screen tools
This new campaign has age specific milestone tracking guides for children up to 5 years of age. CDC Milestone all_checklists The site also includes information for parents about how to talk with their child’s doctor. cdc_talktodoctor
The Arc offers a wide spectrum of programs and resources for people with disabilities and their families. Leader in advocacy programs through local Arc efforts and government at all levels.
On the Arc Michigan Site:
Michigan Alliance for Families (MAF):
MAF provides information, support, and education for families who have children who receive (or may be eligible to receive) special education services. This website can help you with finding information on special education issues as well as disability specific information.
Our goal is to increase the involvement of families in their children’s education. To do this, we offer learning opportunities across the state, leadership mentoring, and support. Parents can connect directly to a local mentor to address the families’ needs.
Leaders In Policy Advocacy (LIPA):
A leadership development program for adults with developmental disabilities and parents of minor children with developmental disabilities. The project trains and supports participants to become leaders in the disability rights movement.
LIPA is free. Participation requires a significant time commitment, and the excellent series of weekend workshops are well worth the time.
Gillette Children Specialty Healthcare is a UCP affiliate specializing in CP treatment.
The Gillette Cerebral Palsy Roadmap offers guides for parents of children in four age groups
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infant to toddler
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early childhood
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middle childhood
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adolescence
The Roadmap outlines eight areas of information:
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mobility
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musculoskeletal
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communications and cognition
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feeding and nutrition
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social/emotional development and behavior
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self-care and daily living skills
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sensory functions
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recreation and fitness
The UCP national office parents guide for children with CP.
“We wrote this booklet because we wanted to share with you what we’ve learned about having a child with cerebral palsy. We’ve tried to answer many of the questions we asked in the first few weeks after the diagnosis was made. We hope that you will find it helpful: not only because it answers questions you have but also because it will help you realize that you are not alone as you, your baby and your family get on with the business of raising your child who has cerebral palsy.”
each-of-us-remembers-parents-of-children-with-cerebral-palsy-answer-your-questions-2013
The UCP My Child Without Limits site offers helpful information for parents of children with CP and other developmental disabilities:
Topics include:
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early intervention
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feeding and nutrition
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therapies and treatments
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successful doctor visits
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helpful forms
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dental care
The US Centers for Disease Control site offers information about screening and diagnosis of CP including evaluation and milestones.
The Center for Parent Information and Resources has compiled a searchable Resource Library. Key topics include:
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Behavior
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Disability
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Dispute Resolution
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Family Supports
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IDEA
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Mental Health
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Parental Rights
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Research
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Section 504/ADA
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Technology
Additional information specific to K-12 issues, Early Intervention/Early Childhood, and the Parent Center can be found as well.
Understood is a digital resource for parents of children with learning and attention issues. The Understood Community is a place for parents to access practical advice with tools to help them navigate common parenting challenges. Parents can:
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Seek free expert advice from trusted professionals
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Participate in daily chats and webinars
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Share personal experiences in a secure environment with other parents
Teens
Possibilities: The Developmental Disabilities Institute of Wayne State offers the Possibilities series of videos. The videos offer information” on the lives and accomplishments of individuals with developmental and intellectual disabilities. Each 4-7 minute video highlights the journeys of different individuals, along with their family and friends, and illustrates the lives possible for all people as they mature, become independent, and pursue their life’s dreams and goals.”
Transitioning teens to adults. The Michigan Transition Outcome Project has a wealth of resources to assist teens growing into adults. This is the MI-TOP mission: “Quality Education assists each student in developing a post-school vision and a pathway to obtain the vision. Effective planning and coordinated implementation are critical for successfully transitioning each student through school to adulthood.”
The I’m Determined Project (imdetermined.org) is a state directed project funded by the Virginia department of Education. It’s focus is on direct instruction, models and opportunities to practice skills associated with self-determined behavior. A Transition Guide includes areas for Independent Living (community participation), Employment, Self Determination and Post-secondary Education & Training.
Learning to Drive and Adaptive Vehicles
The National Highway Traffic Safety Administration has a comprehensive website about people with disabilities learning to drive
There are many options and considerations in choosing a modified vehicle. There are programs that help pay part or all of the cost of vehicle modification, depending on the cause and nature of the person’s disability as well as an employment-related need. The Michigan Assistive Technology Loan Fund provides low-interest loans to purchase adapted vehicles and other assistive technology equipment.
Contact the Loan Fund Manager at 800.828.2714 and view the AT page of this website.
Some manufacturers may have rebates or other plans for modified vehicles.
Daimler Chrysler Corporation (800) 255-9877 (TDD Users: (800) 922-3826)
Ford Motor Company (800) 952-2248 (TDD Users: (800) TDD-0312)
General Motors Corporation (800) 323-9935 (TDD Users: (800) TDD-9935)
Saturn (800) 553-6000, Prompt 3 (TDD Users: (800) 833-6000)
Volkswagen (800) 822-8987
Audi (800) 822-2834
Michigan will waive the sales tax for adaptive devices if you have a doctor’s prescription for their use. You may also be eligible for savings when submitting your federal income tax return. Check with a qualified tax consultant to find out if the cost of your adaptive devices will help you qualify for a medical deduction.
Know the Licensing Requirements – In Michigan, you must be licensed in order to operate a motor vehicle on public streets and highways. You cannot be denied the opportunity to apply for a permit or license because you have a disability. However, you may receive a restricted license, based on your use of adaptive devices.
Resources:
Department of Transportation Website:
Department of Transportation Auto Safety Hotline: 888-DASH-2-DOT (888-327-4236).
The Association for Driver Rehabilitation Specialists
Michigan Secretary of State Website
National Mobility Equipment Dealer’s Association
Adaptive sports are available throughout Michigan.
Rehabilitation Institute of Michigan’s SportsAbility
Athletes With Disabilities Network
This is an incomplete list of adaptive sports activities available in Michigan that we compiled in 2012:
bay-county-recreation.original
NEW report from the Developmental Disabilities Network regarding employment in Michigan: 115075_mpa_employment_first_rprt_prf5
“This report uses data never before collected to paint an accurate picture of the actual state of employment for individuals with disabilities in Michigan,” said Elmer L. Cerano, Executive Director of MPAS. “While so much effort is going into assisting our state in its economic recovery, Michigan must be more aggressive in including what is the country’s single largest untapped workforce. People with disabilities in Michigan have marketable skills and a documented strong desire to work. The fact that we have over 8,000 of our citizens being placed in segregated work environments making an average $2.75 per hour is simply unacceptable. The workers deserve better and we must do better.”
According to MPAS ” Key findings from the report include:
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60 percent of individuals with disabilities in Michigan want a job in their community; however, only 17 percent of them have one;
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There are over 70 non-profit Community Rehabilitation Programs operating sheltered workshops (located in 39 Michigan counties) paying their workers with disabilities significantly less than minimum wage;
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These sheltered workshops account for over 8,000 individuals with disabilities being compensated an average wage of $2.75/hour;
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Approximately 23 percent of employees with disabilities earned under $1/hour, while 47 percent of all employees earned below $2 per hour and;
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69 percent of individuals with developmental disabilities who are “working” and served by Community Mental Health Services Programs (CMHSPs) in Michigan are doing so in segregated, non-competitive employment settings.”
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See more at: mpas.org/newsroom/michigan-developmental-disability-network-releases-report-employment-individuals
Services and Supports: Many people with disabilities obtain services and supports through the Michigan Department of Community Health and the Community Mental Health system. These systems can be complicated to learn. Call your local CMH to ask if you are eligible for services. CMH_directory_428570_7
The Arc of Michigan offers a Consumer and Family Guide for people with disabilities. ARC_brochure_3-24_102655_7 This guide outlines the CMH service system, Social Security, Medicaid, Medicare and many other issues.
The Arc offers Leaders In Policy Advocacy (LIPA), a leadership development program that trains and supports participants to become leaders in the disability rights movement.
The Arc supports Michigan Partners for Freedom which helps people learn about key concepts in Michigan developmental disability services.
The Michigan Department of Community Health offers the following important guides regarding self determination, person centered planning:
The State of Michigan’s Disability Resource site links users to housing, employment, Medicaid, Medicare and benefits.
Disability.gov – wide ranging resources including employment, health, housing and education.
Conductive Education Evaluation Project (CEEP)
Michigan State University’s Conductive Education Evaluation Project (CEEP) is a research study offering 2 -6 year old Michigan residents with cerebral palsy a free 4-week session at the Conductive Learning Center (CLC) in Grand Rapids. Children are enrolled in a session that fits their age and abilities, and is convenient for their family’s schedule. Enrollment is continuous so there is no deadline for participating.
CEEP enrolls children who:
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are diagnosed with CP
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are 2-6 years old when starting CLC
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are Michigan residents
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speak english
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have never attended Conductive Education
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see well enough to make eye contact
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can carry out simple instructions
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have no chronic medical conditions that would interfere with regular attendance at CLC
can stop receiving current physical therapy, or other programs for CP, for 4 weeks while attending CLC Time & Transportation:
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Families must be willing to transport their child to CLC for 4 weeks, Monday - Friday, for a 3 or 5 hour program. Children ages 2-3 will be enrolled in the "Parent and Child Group" session, where the parent or caregiver stays with the child at all times.
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After a free 4-week session at CLC, there is NO obligation to continue Conductive Education. You are free to participate in whatever services you and your child prefer.
What is Conductive Education?
Conductive Education (CE) combines the development of physical, social and thinking skills in a daily educational program for children with motor disabilities such as CP or spina bifida. Its goal is to teach children how to make the most use of their muscles, and to encourage social interaction and independence. Children learn in a small group setting with attention to individual needs. Many CE activities use rhythm, music, and specially designed exercise equipment.
CE was developed in Hungary in 1945 and is currently practiced in over 30 countries. Grand Rapids' private, non-profit Conductive Learning Center (CLC) was established in 1998. Find out more at www.conductivelearningcenter.org
How to enroll in the CEEP study?
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You and your child will be interviewed by the CLC director for eligibility
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If eligible, your child will be assessed with standard tests to learn about their movement abilities. These assessments can be enjoyable for children. Assessments will be videotaped, with copies available on request.
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Parents will be asked to complete several questionnaires about their child's physical and social skills and activities.
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At no cost, your child will receive a 4-week CE session (60-100 hours) at CLC
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After the CLC sessions, you and your child will complete another set of assessments and questionnaires
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All information will be kept strictly confidential.
CEEP Study Team
Madeleine Lens, MSPH
Nigel Paneth, MD, MPH
Deborah Weiland, MSN
Dept. of Epidemiology and Biostatistics
Michigan State University
909 Fee Rd., rm B601
East Lansing, MI 48824
517-535-8623 ext. 114