Advocating for Dynamic and Meaningful Engagement in Life

Content Outline

*Introduction

*Role of Occupational Therapy

*Cerebral Palsy Resources

      -Facebook Support Pages 

      -Support Groups 
      (physical and virtual)

      -Funding Sources

      -Education and Training

      -Advocacy 

* Specific Resource Guide 

Hello everyone!

      My name is Heather Carman, I am a graduate occupational therapy student at Towson University. As a future occupational therapist, I believe it is so important that individuals of all ages, race, gender and disability have lives that are filled with meaningful activities that they can engage in, no matter what. 

      A disability in particular has touched my heart because it is a disability that can be so misunderstood, in fact it is something I did not understand for the longest time. This disability is cerebral palsy or CP, it is a condition that can present itself in many ways but primarily it severely limits a persons motor functions. Many individuals with CP have completely typical mental abilities and many others have experienced damage to their brains resulting in intellectual disabilities.
      However all individuals with CP, with or without brain damage suffer from a world of people who may not see how incredibly wonderful, capable and loving these individuals can be and how they have immense purpose in this world. Those who do desire to increase their or their child's abilities to engage in occupations may find it difficult, run into barriers and or become emotionally overwhelmed.  

Role of Occupational Therapy 

An occupational therapist (OT) can be your guide!

• From an OTs perspective, health and well being is dependent on a persons dynamic interaction with their friends, family, and the environment. 
• Real-life experiences is what enables people to learn and develop skills. 
• Engagement allows them to feel determined, satisfied, and independent, even if its independent with small things!

How can an OT help you increase active and purposeful engagement?

Follow a general five-step process for participation-based Therapy

1.  Develop a collaborative relationship with the family and child
2. Determine mutually agreed upon goals for home and community participation
3. Assess child, family, and environment strengths and what needs to occur
4. Develop and implement the intervention plan
5. Evaluate processes and outcomes with the child and family 

(Palisano, 2012)

Strategies and procedures for participation-based therapy.

• Addressing information needs of the child, family, and community providers.

• Educating the child, family, and community providers on issues pertaining to the goal.
• Supporting the family in development of advocacy skills such as explaining to others how to assist the child to participate in an activity and promoting
the availability of community programs and activities that include children of all abilities.
• Identifying and implementing activity adaptations and accommodations, including assistive technology.
• Identifying and supporting real-life experiences and learning opportunities in natural environments including environmental modifications to enable
accessibility.
• Consulting to teachers, instructors, coaches, and community programs to address questions and provide recommendations for the child’s participation.
• Providing instruction to the child and family on monitoring practice of physical abilities needed for achievement of the goal. For some children, practice
will be progressed from closed (more restrictive) to open (less restrictive) environments.
• Providing instruction to the child and family and monitoring practice of cognitive, language, behavioural, and social competencies needed for
achievement of the goal.
(Palisano, 2012)

Cerebral Palsy Support and Resources

Facebook Pages 

Offer Care Groups, Organizations, education and support for individuals with Cerebral Palsy, their family members, and caregivers: (Click on any of the links!)

·      Mommies of Miracles

·      United Cerebral Palsy

·      Cerebral Palsy.org

·      Cerebral Palsy Support Group

·      Cerebral Palsy Alliance

·      Cerebral Palsy Life & Love

·      Advocating for Cerebral Palsy Awareness

·      Cerebral Palsy Advocates of the World

·      Cerebral Palsy Awareness

·      The Parent’s Place of Maryland

·      Cerebral Palsy Awareness

·      Adults With Cerebral Palsy Advising Parents of Kids With CP

·      Cerebral Palsy Family Network

Other Resources

Parent Training and Information Center (PTI)

Families with a child who has a disability have special concerns and often need a great deal of information: information about the disability of their child, about early intervention (for babies and toddlers), school services (for school-aged children), therapy, local policies, transportation, and much more.

National PTI Center for Parent Information and Resources website: http://www.parentcenterhub.org

Maryland PTI


Parents’ Place of Maryland, Inc.


801 Cromwell Park Drive, Suite 103


Glen Burnie, MD 21061

Phone: (800) 394-5694 | (410) 768-9100

Email: Info@ppmd.org

Maryland PTI website: http://www.ppmd.org

  

Parent 2 Parent USA

Parent to Parent USA (P2PUSA) is a national non-profit organization committed to promoting access, quality and leadership in parent to parent support across the country.

Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health issue. Through a one to one "match" experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs are committed to listening and learning from families and developing an array of services and supports in response to family identified needs.

P2P Website: http://www.p2pusa.org

Maryland Program: Baltimore JAA Parent to Parent

5700 Park Heights Avenue,

Baltimore Maryland, 21215

Program Director: Jen Erez

Email: Jerez@jcc.org

Phone: 410-559-3613

Website: http://jewishabilities.org

United Cerebral Palsy on the Potomac

UCP on the Potomac is proud to offer a variety of services designed to meet the needs of our community.  We currently offer Day Habilitation services with a focus on creativity, leisure, and community integration as well as Vocational Day services with a focus on learning job skills in preparation for Supported Employment. Programs include: Job Development and Job Coaching, Community Supported Living Assistance, Individual Support Services and Family and Individual Support Services,

4409 Forbes Boulevard

Lanham, Maryland 20706

301-459-0566 (phone)

Contact Cynthia Williams at CYWilliams@sunrisegroup.org to schedule a tour or ask general questions. 

Website: http://www.ucppotomac.org

Mom 2 Mom

The Mom 2 Mom program is designed to provide a compassionate and encouraging environment for mothers of children with special needs to come together and share support.

24/7 Mom2Mom helpline (877-914-MOM2): Peer Supporters will be available to provide telephone peer support to callers in need. Moms of special needs children trained in peer counseling and crisis support will offer peer support, explain resources, and explore your needs. Peer support is also available through the website for a live chat experience online.

Email: mom2mom@umdnj.edu

Website: http://www.mom2mom.us.com

Catalyst Center Improving Financing of Car for Children and Youth with Special Health Care Needs

Our work at the Catalyst Center focuses on helping to create strategies that improves coverage and financing of care for children with special health care needs at the policy level.  We apologize that we cannot offer direct benefits counseling or advocacy to individuals.  However, one or more of the organizations and resources listed by state on the Family Resources page may be able to help.

Catalyst Center Contacts:
Meg Comeau, M.H.A., Co-Principal Investigator
(302)329-9261
mcomeau@bu.edu
Beth Dworetzky, M.S., Project Director
(617) 638-1927
bethdw@bu.edu
Website: http://www.hdwg.org/catalyst/

United Cerebral Palsy


United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities.

Local Chapters will provide support group information 



Cerebral Palsy Support Group of Howard County


Phone; (410) 992-4599 Dan Dotson


Meets the last Thursday of the month.

Website: http://www.ucp.org

Specific Resource Guide

Find Help and Services in Your Community

There are a myriad of disability, health and human service programs in every state and community however they are not always easy to find. Whether you need healthcare, home modifications, or financial assistance—we can direct you to the organizations that can help. 

Your Local UCP Affiliate
UCP Affiliates provide services such as housing, physical therapy, assistive technology training, early intervention services, individual and family support, social and recreational programs, community living, state and local referrals, employment, employment assistance and advocacy.

Centers for Independent Living
Directory of Centers for independent living (CILs) which are private, nonprofit corporations that provide services to maximize the independence of individuals with disabilities and the accessibility of the communities they live in. CIL’s provide individual and systems advocacy, independent living skills training, information and referral and peer counseling.

State Departments of Disability Services
Directory of offices that oversee the statewide delivery of individually appropriate services and supports to persons with disabilities. 

State Councils on Developmental Disabilities
Directory of State Councils on Developmental Disabilities. Councils are federally funded programs charged with  identifying the most pressing needs of people with developmental disabilities in their State or Territory. Councils work to promote self-determination, integration and inclusion for people with developmental disabilities.

2-1-1 Information and Referral Call Centers
Directory of 2-1-1 lines across the country. 2-1-1 are free information and referral lines for health, human and community services. 2-1-1 provides information and referral on topics such as emergency food pantries, rental assistance, public health clinics, child care resources, support groups, legal aid, and a variety of non-profit and governmental agencies.

Aging and Disability Resource Centers
Listing of Aging and Disability Resource Centers which serve as single points of entry into the long-term supports and services system for older adults and people with disabilities.

Find Financial Assistance

Financial assistance for people with disabilities can come in the form of benefit payments, vouchers, grants, subsidies, loans or rebates and often is income based.

In addition to government programs like Social Security and Medicaid, there are a variety of financial resources available from other public and private organizations, charities, and foundations. In most cases, financial assistance is distributed on the state and local levels.  Learn more from the links below.

UCP Bellows Fund
The UCP Elsie S. Bellows Fund is a national program operated by UCP that provides funds to individuals with disabilities for assistive technology equipment. Individuals can apply through their local UCP affiliate and the affiliate submits an application on behalf of an individual to the UCP national office. Applications are reviewed for funding by the Bellows Committee.

Social Security Disability BenefitsThe Social Security Administrations provides benefits through two programs: the Social Security disability insurance program and the Supplemental Security Income (SSI) program. Learn more about these programs including eligibility, how to apply and how to appeal a claim denial.

Medicaid and Medicare
All about medicaid and medicare from the Centers for Medicare and Medicaid services.

Medicaid Waiver Programs
These programs are state based and administered by the medicaid authority. Waiver programs may provide a combination of both traditional medical services (i.e. dental services, skilled nursing services) as well as non-medical services (i.e. respite, case management, environmental modifications) This list contains information about state-specific programs.

Benefits.Gov
Benefits.gov (formerly GovBenefits.gov) was launched in an effort to provide citizens with easy, online access to government benefit and assistance programs.

State Assistive Technology Programs
Directory of the federally funded programs under the Assistive Technology Act that promote people’s awareness of, and access to, assistive technology devices and services. Many programs provide funds and/or low interest loans to purchase devices.

College Scholarships and Financial Aid
Financial aid resources from the National Youth Transitions Center, an online clearinghouse on transition and postsecondary education for individuals with disabilities.

United Healthcare Children’s Foundation
The Foundation provides financial assistance to families of children whose commercial  insurance coverage does not fully cover the cost of treatment.

Partnership for Prescription Assistance Programs
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.

NeedyMedsNeedyMeds is a non-profit information resource devoted to helping people in need find medication assistance programs, disease-based assistance, free and low- clinics, government programs and other types of assistance programs that help with costs related to health care.

Variety: The Childrens Foundation
Administers the Variety Kids on the Go! program which  provides funding for walkers, wheelchairs, specially-designed adaptive bikes, strollers, prosthetic limbs and other devices to families of children with disabilities.

Disabled Children Relief Fund
The fund provides children with disabilities assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery.

What is Cerebral Palsy?

Cerebral Palsy Fact Sheet
UCP’s fact sheet on cerebral palsy including statistics, risk factors, and effects.

Understanding Cerebral Palsy
In-depth guide to cerebral palsy from the My Child Without Limits website including causes, diagnosis and classification, differential diagnoses, common health problems and treatments.

Cerebral Palsy PodcastThis podcast from the Centers for Disease Control and Prevention (CDC) describes the causes, preventions, types, and signs and symptoms of cerebral palsy.

Laws and Advocacy

ADA National Network
The ADA National Network provides information, guidance and training on the Americans with Disabilities Act (ADA), tailored to meet the needs of business, government and individuals at local, regional and national levels. The ADA National Network consists of ten Regional ADA National Network Centers located throughout the United States that provides personalized, local assistance to ensure that the ADA is implemented wherever possible.

Protection and Advocacy for People with Disabilities Network
Each state has a federally mandated protection and advocacy agency that  safeguards and advances the civil and human rights of people with disabilities. Agencies provide information and referral, investigate complaints of rights violations, and work to resolve complaints through mediation, dispute resolution, and litigation.

American Bar Association Commission on Mental and Physical DisabilityThe Commission carries out an array of projects and activities addressing disability-related public policy, disability law, and the professional needs of lawyers and law students with disabilities.

Disability Publications

Ability Magazine
A leading magazine that focuses on health, disability and human potential and provides new insights on individuals levels of ability.

Exceptional Parent
An online magazine for parents of children and young adults with disabilities, includes news forum, links, and online bookstore.

New MobilityAn online magazine for users of wheelchairs, includes calendar of events and news forums. 

Journal of Developmental Medicine and Child Neurology
The official journal of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the British Paediatric Neurology Association (BPNA). DMCN aims to enhance the care of children by worldwide dissemination of clinical research into the wide range of neurological conditions and disabilities that affect children to researchers, health professionals concerned with developmental disability and child neurology, and others involved in the care of children and young people.

As a part of this advocacy assignment, please comment on how this blog impacted you!

Thank you!

References:

Palisano, R. J., Chiarello, L. A., King, G. A., Novak, I., Stoner, T., & Fiss, A. (2012). Participation-based therapy for children with physical disabilities. Disability & Rehabilitation, 34(12), 1041-1052. doi:10.3109/09638288.2011.628740