Disease/Disability Information

Services Provided:

• Technical assistance and training in the areas of Early Intervention Early Intervention, infant mental health and trauma-based care practices, inclusive practices in schools, Positive Behavioral Interventions and Supports and Multi-Tiered Systems of Supports in schools, learners with low incidence disabilities (vision, hearing, deaf-blindness) Dual Sensory, transition from high school , and community-based employment strategies for youth and adults.
• Services include:
o Instruction and mobility services to children who are blind or visually impaired.
o Educational Advocates for students with disabilities who are in state care.
o Benefits counseling and assistance for Social Security beneficiaries.
o Family support and navigation of services.
o Support group for self-directed support users (DDD)
o Plan writing for self-directed support users (DDD).
o Support for parents with intellectual disabilities.
o Support to students in post-secondary education.

Paul V. Sherlock Center on Disabilities, founded at Rhode Island College in 1993, is a University Center for Excellence in Developmental Disabilities (UCEDD). UCEDDs are evidence driven and designed to advance policies, practices, and research that improve the health, education, social, and economic well-being of people with disabilities, their families, and their communities. There are 67 UCEDD programs in the United States. This national network is administered through the United States Department of Health and Human Services Administration on Developmental Disabilities.
The Sherlock Center partners with state and national agencies, schools, institutions of higher education and community providers to implement its core functions: preservice preparation, services (including technical assistance, community education, and direct services), research, and information dissemination. As of 2016, the Sherlock Center is a LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Program.
Areas of Emphasis:
Early Childhood and Education
Inclusion and Community Membership
Low Incidence Disabilities
Self-Determination
Transition, Employment and Adult Life
Workforce and Professional Development

• Professional Training Program, classroom and individual consultation
• Parent Education Series and Support
• Grandparent Support Groups
• Social Skill Groups
• Respite Information
• Summer Camp WANNAGOAGAIN
• Advocacy
• Instructional videos

The Autism Project is a ‘Hub of Hope’ that connects people—with a spectrum of needs—to the available resources and education that support independent and purposeful lives.
Autism Project
1516 Atwood Avenue
Johnston, RI 02919

TALC is a program for adolescents (age 13-18) who live with chronic  medical illness and their families.  We provide year-round programming focusing on support, advocacy, and healthcare transition skills.

• Monthly Council Meetings for members
• Parent Group
• Mentors age 18-22
• Leadership Opportunities TALC is also the official youth advisory council for Hasbro Children's Hospital. TALC members provide leadership to the hospital for issues related to the patient experience.  

See website for video of members explaining how the program works and why you should join TALC!

Transitioning from childhood to being a teenager, to the independence of young adulthood is challenging. Consider what it would be like to cope with typical teen angst and have to manage a chronic illness as well.

For teens with a variety of chronic medical conditions such as asthma, diabetes, lupus, cancer, sickle cell anemia, Crohn’s disease, and epilepsy, they don’t have to do it alone. The Adolescent Leadership Council (TALC) provides a forum for adolescents ages 13-18 who are managing a chronic illness to interact with peers who are going through similar experiences and to meet college-age mentors who also have a chronic illness. Through programming, TALC members gain insights and perspective along with the confidence and advocacy skills needed to navigate their medical circumstance in the short- and long-term.

TALC teens meet monthly during the academic year, participate in social and art-related events, attend an annual team-building retreat and an annual overnight summer leadership camp. TALC also serves as the official “Youth Advisory Council” for the hospital.

Contact Erin Scott, TALC Program Coordinator, at erin.scott@lifespan.org

Partial Hospital Program link

Inpatient Hospital Program ages 12-17 link

The Medical Psychiatric Program at Hasbro Children’s Hospital addresses the needs of children and adolescents who are struggling with psychiatric and medical illness at the same time. Patients we care for may have gastrointestinal illnesses, eating disorders, diabetes, asthma, seizures, pain syndromes, somatoform disorders, and complex presentations that require diagnostic evaluations.

Ours is the only program in the region designed to provide family-based integrated care for young people with these health challenges. Inpatient and partial hospital levels of care are available. 

Our specialists provide evaluation and treatment to children with a range of acute and chronic respiratory conditions, including:

• Asthma
• Cystic fibrosis
• Bronchopulmonary dysplasia
• Obstructive sleep apnea
• Interstitial lung disease
• Congenital lung and airway abnormalities
• Respiratory disease associated with gastroesophageal reflux
• Ventilator dependence
• Tracheostomy
• Primary ciliary dyskinesia
• Sickle cell lung disease
• Vocal cord dysfunction
• Tracheomalacia
• Respiratory disease associated with neurological and neuromuscular disorders
• Chronic cough

We provide the following services:

• Cystic Fibrosis Center
• Flexible Bronchoscopy Service
• General Pediatric Pulmonary
• Pulmonology Function Test Lab
• Ventilator Integration Program (VIP)

Information on members of the Pediatric Pulmonology Care Team Link 

The Cystic Fibrosis Center is certified by the Cystic Fibrosis Foundation.

Additional Office Locations

Lifespan Ambulatory Care Center
East Greenwich Specialty Clinic
1454 South County Trail
East Greenwich, RI 02818

East Providence Offices
900 Warren Avenue, Suite 201
East Providence, RI 02914

Outpatient care for specialized behavioral health needs of individuals ages 5-21 with developmental challenges , including Autism Spectrum Disorders, anxiety, mood dysregulation, ADHD, adjustment problems, aggression and oppositional behavior as well as challenges to parents and families.

The clinic offers Individual Therapy, Family Therapy, Parent Training in behavior management, group therapy, Medication management, psychiatric consultation, and genetic psychiatry consultation

Clinical staff includes:
psychologists
social worker
psychiatrists

West Bay Regional Transition Center
Therese Curran
Director of Transition & Vocational Services
144 Bignall Street
Warwick, RI 02888
phone: 401-941-8353 x124
fax: 401-941-8535
email: tcurran@westbaycollaborative.org

Southern RI Regional Transition Center
Kerri Collins
Director of Regional Transition – Southern Region
859 Nooseneck Hill Road
West Greenwich, RI 02817
phone: 401-481-5161
email: kcollins@westbaycollaborative.org

Northern RI Regional Transition Center
Jennifer Doucette
Director of Regional Transition – Northern Region
51 Intervale Avenue
North Providence, RI 02911
phone: 401-465-2466
fax: 401-941-8535
email: jdoucette@westbaycollaborative.org

East Bay Regional Transition Center
Joanne DelAngelo, Coordinator
200 Metro Center Boulevard, Suite 5
Warwick, RI 02886
phone: 401-862-4133
email: jdelangelo@fedcap.org

Additional information on Rhode Island Secondary Transition and Employment First

link

In order to assist Local Educational Agencies in meeting the secondary transition requirements, West Bay Collaborative maintains four Regional Transition Centers (RTCs). These centers assist middle and high schools regionally and statewide through coordination of the four Regional Transition Coordinators.

The services provided through the RTCs include service to public, non-public and charter schools serving youth eligible under IDEA (Individuals with Disabilities Education Act) and work in partnership with adult service agencies, higher education institutions, training programs, and parent advocacy organizations serving young adults with disabilities.

Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Serves children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Provides comprehensive online information including six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

Find a Provider: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

Tourette Syndrome Centers of Excellence: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.

A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.

AACPDM Medical Professional Directory offers patients and families the option to search for members by locations, specialty and/or patient type.

The website also offers continuing education for professionals and educational resources for individuals and families.

Mission: Propionic Acidemia Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Organization offers educational resources for families and patients, a patient registry, conferences and trainings, online support groups, and more.

The SPD Foundation offers online courses, resources, advocacy, and support groups for professionals, parents, and others interested in helping individuals with Sensory Processing Disorder.

Supports research, public health education, professional health education, patient services, community services, and global organizations. National nonprofit with chapters in multiple states. 

Advocates for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Offers support to children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families.

Online Resources Include:

• A variety of clinical and patient resources
• Educational events for clinicians
• Find a Pediatric Endocrinologist: Search the Pediatric Endocrine Society membership list.
• Upcoming Camps: Directory of specialty camps for kids, including Diabetes Camps, Turner Syndrome Camps, and Transgender Youth and Teen Camps. Not run or endorsed by the Pediatric Endocrine Society.

Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.  Offers support groups for people with epilepsy.

Spanish-language line: 866-748-8008

Provides training and education on hearing, hearing loss, and hearing aids.

• Disease/Disability Information
• Health/Disability Related Support Groups

• Communicable Disease Control
• Vaccine Information

• Internet Information Resources
• Disease/Disability Information
• Specialized Information and Referral
• Medical Information Services

• Specialized Information and Referral
• Medical Care Expense Assistance

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Improves the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.

• Health/Disability Related Support Groups
• Disease/Disability Information
• Voluntary Health Organizations

Chapter Finder: Find support and connection in your community.

Works to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral

Nationwide community-based voluntary organization dedicated to eliminating cancer as a major health risk through research, education, advocacy.

Provides advocacy, education, information and referral, support for the Autism community at national, state and local levels through a nationwide network of Affiliates.

Provides ongoing support and direct services to individuals with multiple sclerosis.

Services Include:

• Individual Advocacy
• Information and Referral
• Equipment Distribution Program by application

The Stuttering Foundation provides resources, services and support to those who stutter and their families as well as support for research into the causes of stuttering.

Free packets of informative brochures, referral lists for fluency specialists and a catalog of resources are available.

The Foundation publishes 30 books, 41 DVD videos and 26 brochures on stuttering. Over 800,000 publications are distributed each year to those who stutter, their families, speech language pathologists, pediatricians, family physicians, clinics, day care centers, libraries and others concerned with the problem of stuttering.

Provides support and funding for type 1 diabetes research. Local JDRF chapter serves as the hub of JDRF information and events.

Services Include:

• Informational Guides
• Virtual community
• Local chapters
• Fundraising and social events

National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision

The MSUD Family Support Group membership includes families and professionals worldwide.

Services Include:

• Providing opportunities for support and personal contact for those with MSUD and their families.
• Distributing information and raising public awareness of MS
• Strengthening the liaison between families and professionals.
• Encouraging newborn screening programs and research for MSUD.

The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

Provides online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.

Provides resources for individuals with thinking and learning differences, including ADHD, dyslexia, and dyscalculia. Information for parents, educators, and young adults. Also offers a workplace program for individuals in the workplace.

Offerings include articles and online resources, information about how to get assistance, and an online community.

Connecting Families UCD Foundation provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Connecting Families UCD Foundation hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

Support group for Fatty Oxidation Disorders. Raises funds for Educational and Networking Services and Programs. Medical information, including information about newborn screening, and support resources.

Resources, information, research information, and support for HCU.

Information about PKU, research, advocacy, and resources.

Find a Clinic by state, zip code, or map.

The goals of the National Urea Cycle Disorders Foundation (NUCDF) are:

• To provide guidance and information to families and others affected by urea cycle disorders.    
• To create a caring community, networking families together for support.    
• To educate healthcare professionals on the identification, diagnosis and treatment of UCD.      
• To stimulate and support research which leads to improved quality of life for today and a CURE for tomorrow.    
• To increase public awareness on the existence of UCDs so that no child or adult ever goes undiagnosed.    
• To educate legislators on the needs of children, adults and families affected by these rare disorders.

AIDS info is a U.S. Department of Health and Human Services (DHHS) project providing information on HIV/AIDS clinical trials and treatment. It is the result of merging two previous DHHS projects: The AIDS Clinical Trials Information Service (ACTIS) and the HIV/AIDS Treatment Information Service (ATIS).

AIDS info is a central resource for current information on federally and privately funded clinical trials for AIDS patients and others infected with HIV. AIDS clinical trials evaluate experimental drugs and other therapies for adults and children at all stages of HIV infection -- from patients who are HIV positive with no symptoms to those with various symptoms of AIDS.

Provides awareness, prevention, and treatment. Under its guiding principles - Education, Advocacy, Research, and Support - the ATA offers prevention programs in schools, urges governmental and private organizations to support hearing conservation, funds the nations brightest researchers, and facilitates self-help groups around the country.

The Foundation aims to improve outcomes for individuals with OCD and related disorders by:

• Providing resources and support for those affected by OCD, including individuals with OCD and related disorders, their family members, friends, and loved ones.
• Promoting awareness about OCD and related disorders to the OCD community and the general public.
• Increasing access to effective treatment through:
  • Educating mental health professionals about evidence-based treatments.
  • Providing a forum for professional collaboration and networking.
  • Supporting research into the causes of and treatments for OCD and related disorders.

Visit https://iocdf.org/find-help/ for help finding providers for patients with OCD,

Provides education for families in identifying development milestones in children from birth to 5 years old. Provides resources and supports (WIC, Early Childhood Intervention, Home-visiting, and Education Materials) for families who may have concerns and how to reach out to a local healthcare provider.

Involved in the research and development of evidence-based behavioral interventions and measurement tools designed to improve care for families and children with autism spectrum disorder (ASD). Also provides the RUBI Autism Network Parent Training program.

Raises awareness of 24 hour posture care management, as a non-invasive, caregiver and family empowering approach improving the quality of life for persons with neuromuscular impairments affecting their motor control and posture. 

Tamara Kittelson, MS, OTR/L, ATP/SMS
Executive and Project Director