INFORMATION AND RESOURCE CENTERS

2-1-1 Maine is a comprehensive statewide directory of over 8,000 health and human services available in Maine. The toll free 2-1-1 hotline connects callers to trained call specialists who can help 24/7. Finding the answers to health and human services questions and locating resources is as quick and easy as dialing 2-1-1.

The Maine Parent Federation is a statewide organization that provides information, advocacy, education, and training to benefit families of children and adults with disabilities and special health care needs.

A service of the Maine Parent Federation, Starting POINTS for Parents is an online community for families of children with disabilities Providing Opportunities for Information Networking, Training and Support as they learn, share, and connect about the educational and developmental needs of their children.

The Maine Health Learning Resource Center has a health educator at each location and can provide personalized help to patients to learn about a disease or treatment, as well as connect people with outreach, awareness, and resources.

The University of Maine Center for Community Inclusion and Disability Studies (CCIDS) brings together the resources of the university and Maine communities to enhance the quality of life for individuals with developmental disabilities and their families. They are committed to enhancing and promoting the interdependence, productivity, integration, and inclusion of Maine citizens with disabilities and their families.

FAMILY FOCUSED RESOURCES

Gaining Empowerment Allows Results (GEAR) helps connect parents to prevent isolation and share knowledge gained by experiences with their children’s disabilities. Through parent-to-parent sharing of experiences and knowledge, G.E.A.R. Parent Network empowers parents of children with behavioral health needs to build on their family’s strengths and to advocate for their family’s needs.

The Maine Alliance of Family Organizations (MAFO) is a statewide alliance that formed to better serve families of children with disabilities and special health care needs, and to strengthen family voice.

A Family Information Specialist or FIS (DHHS Dept. of OCFS) Providing information and referral services about resources needed by parents of a child with special needs, the FIS can offer resource lists that include such varied information as specialized summer camps, support groups, medical professionals, case management, and home & community based services. Each FIS is a parent of a child with special needs who works with families and the Office of Children and Family Services (OCFS) to meet the needs of the children, also working closely with many different professionals and organizations.

Southern Maine Parent Awareness (SMPA) is dedicated to providing information, referral support and education to families who have children and youth with special needs throughout Maine. They offer individualized family conferences, consultation via telephone and email, and assistance in preparing for IFSP/IEP meetings.

CHILD FOCUSED RESOURCES

The Maine Children’s Alliance (MCA) is committed to improving the lives of Maine’s children, youth, and families. Acting as nonpartisan, data-focused advocates for public policies that improve the lives of Maine’s children, youth, and family, the MCA seeks to link research to practice and public policy as they serve as a resource on children and family policy issues.

Department of Health and Human Services, Office of Children and Family Services (OCFS) provides information and referrals for children to their 21st birthday with developmental disabilities/delays, mental retardation, Pervasive Developmental Disorder (PDD)/autism, and mental health disorders. The Office of Child and Family Services (OCFS) serves Maine’s children and their families through the Divisions of Child Welfare, Children’s Behavioral Health, Early Childhood, and Public Service Management.

Children’s Behavioral Health (CBH) provides information and assistance with referrals for children and youth with developmental disabilities/delays, intellectual disability (mental retardation), Autism Spectrum Disorders, and mental health disorders. Behavioral health treatment and services are available for children from birth up to their 21st birthday.

Families and Children Together (FACT) Their family focused programs encourage and foster the development and healing of children with emotional and behavioral challenges.

Camp Sunshine provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support.

PROGRAMS AND SERVICES

Camp Sunshine provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.

The Morrison Center is a private, not-for-profit agency that specializes in the support and development of children and adults with and without disabilities. Offering a broad range of day programs and services, they support individuals and their families and encourage maximum growth and independence. Programs include the Friends First Preschool & Child Care Program, a K-12 School Program, and the adult AHEAD I and II programs.

The Maine Division for the Blind and Visually Impaired (DBVI) offers comprehensive services for visually impaired and blind individuals of all ages. Offering vocational rehabilitation services to help individuals retain or return to employment, DBVI can provide individual counseling, guidance, and vocational assessment as well as orientation and mobility instruction to develop independent travel skills.

Maine Health Learning Resource Center offers a helpful website for anyone affected by cancer.

National Alliance on Mental Illness of Maine (NAMI Maine) is dedicated to improving the quality of life of everyone affected by mental illness. Services are provided both directly and through a statewide structure of local affiliates and support groups. NAMI Maine offers compassion and provides social/emotional support, as they educate, inform, provide resources, and advocate for quality services.

The Pine Tree Society provides Maine children and adults with disabilities the opportunities and the means to create better lives for themselves and their families. People with disabilities may feel left out or isolated, but with the help of Pine Tree Society, they lead richer, more socially connected lives. Sharing a spirit of innovation, we help discover ways to break down barriers that many find insurmountable. Our service areas are: Assistive Technology, Communication, Community Supports, and Accessible Recreation.

Special Olympics transforms lives through the joy of sport, every day, everywhere. The world’s largest sports organization for people with intellectual disabilities, it serves nearly 4 million athletes in more than 170 countries.

LOCATION-SPECIFIC PATIENT SERVICES

CarePartners coordinates the provision of donated health care services for low-income, uninsured residents in four Maine counties (Cumberland, Lincoln, Waldo, and Kennebec). The program, a partnership among MaineHealth, physicians, hospitals, and other health care providers, helps community members who don’t qualify for public or private healthcare coverage programs get comprehensive, medically necessary healthcare.

The Children’s Center, a nonprofit organization, advocates for children with differing abilities and their families by offering programs that encourage individual growth and development of children, providing support for their families and promoting community inclusion. Respite Care is a statewide program, funded by the Department of Health and Human Services (DHHS) and run by contract agencies in Portland, Augusta, and Bangor. Respite Care supports families raising children with special needs. The Children’s Center is located in Augusta and offers a fully accessible playground that includes a unique 30-foot-long water feature.

The Beth Wright Cancer Center in Ellsworth offers support groups, resource materials, informational lectures and films, wellness activities, Reiki, Yoga, and transportation assistance.

The Patrick Dempsey Center for Cancer Hope & Healing provides free support, education, and integrative medicine services to anyone impacted by cancer. Patients served are in Androscoggin, and Cumberland.

ADVOCACY

Client Assistant Program — C.A.R.E.S. is a privately held company that provides advocacy, case management, and assistive technology for Maine’s citizens with disabilities. C.A.R.E.S. offers advocacy, case management, program evaluation, and policy development and administers three federally funded programs including Independent Living Services (ILS) for veterans with disabilities through the Veterans Administration (VA) at Togus.

Disability Rights Center (DRC) provides individual advocacy through several different programs it operates. Each program has eligibility requirements and case selection criteria. Descriptions of the programs, the eligibility requirements, and the case selection criteria are available through DRC. DRC is available to provide training to individuals with disabilities, providers of services, the general public, and family/friend support networks.

Consumers for Affordable Health Care (CAHC) has worked to protect the rights of health care consumers in Maine. This nonprofit, nonpartisan organization is committed to helping all Maine people obtain quality, affordable health care with activities that include research, advocacy, education, and consumer assistance.

PATIENT ASSISTANCE PROGRAMS

MedAccess works with individuals and health care providers to identify ways patients can save money on prescription medications. The free program, administered by MaineHealth, helps patients and health care providers evaluate options.

Many hospitals are committed to treat all patients who need care regardless of their health insurance or financial status. For medically necessary treatment, most offer services to help you arrange for payment of your bill, from insurance billing to payment plans and even financial assistance, which may qualify you for free care or reduced payment. Eastern Maine Medical Center (EMMC) has a representative program similar to other hospitals and clinics throughout Maine; call your local hospital to inquire.

GOVERNMENTAL PROGRAMS OR AGENCIES

The Department of Health and Human Services (DHHS) for the State of Maine provides integrated health and human services to the people of Maine to assist individuals in meeting their needs within available resources, while respecting the rights and preferences of the individual and family. They strive to deliver services that are individualized, family-centered, easily accessible, preventive, independence-oriented, interdisciplinary, collaborative, evidence-based, and consistent with best and promising practices.

Department of Health and Human Services, Office of Children and Family Services (OCFS) provides information and referrals for children to their 21st birthday with developmental disabilities/delays, mental retardation, Pervasive Developmental Disorder (PDD)/autism, and mental health disorders. The Office of Child and Family Services (OCFS) serves Maine’s children and their families through the Divisions of Child Welfare, Children’s Behavioral Health, Early Childhood, and Public Service Management.

The Children with Special Health Needs Program’s mission is to improve the health and well-being of this population by developing and sustaining community-based systems of care. Part of the Population Health, the Children with Special Health Care Needs program is affiliated with the Maine Department of Health and Human Services and the Maine Center for Disease Control & Prevention.

The Office of MaineCare Services (OMS) coordinates a variety of programs and benefits, ensuring that they operate under consistent policy in keeping with the Department’s goals and Federal mandates, and are administered effectively and efficiently. Programs include MaineCare (also known as Medicaid), Maine Rx Plus, Drugs for the Elderly and Disabled, and free or low-cost health insurance for families with children and pregnant women.

Katie Beckett is one MaineCare option for children under 18 with serious health conditions. If a child meets the rules for this option, that child may be eligible for MaineCare’s full benefits. Contact your local DHHS office if you have questions about the Katie Beckett benefit and ask to speak with the Katie Beckett Eligibility Specialist.

Maine CITE Program, affiliated with the Maine Department of Education, is the statewide organization designed to help make assistive and universally designed technology more available to Maine children and adults who need them.

A Family Information Specialist or FIS (DHHS Dept. of OCFS) Providing information and referral services about resources needed by parents of a child with special needs, the FIS can offer resource lists that include such varied information as specialized summer camps, support groups, medical professionals, case management, and home & community based services. Each FIS is a parent of a child with special needs who works with families and the Office of Children and Family Services (OCFS) to meet the needs of the children, also working closely with many different professionals and organizations.

The Division of Vocational Rehabilitation (VR) is a Department of Labor program that helps people who have disabilities to find and keep a job. VR helps people who have physical, mental, or emotional disabilities and also assists students with disabilities in coordinating information and resources as they transition from high school to adult life.

The Office of MaineCare Services (OMS) oversees MaineCare (also known as Medicaid), Maine Rx Plus, and Drugs for the Elderly and Disabled.

MaineHealth Learning Resource Center offers a helpful website for anyone affected by cancer.

Medicare provides health insurance for people age 65 or older and under age 65 with certain disabilities.

MAINE HEALTH CARE

Ensuring that they operate under consistent policy in keeping with the Department’s goals and Federal mandates, and are administered effectively and efficiently. Programs include MaineCare (also known as Medicaid), Maine Rx Plus, Drugs for the Elderly and Disabled, and free or low-cost health insurance for families with children and pregnant women. http://www.maine.gov/dhhs/oms/

The Children with Special Health Needs Program’s mission is to improve the health and well-being of this population by developing and sustaining community-based systems of care. Part of the Population Health, the Children with Special Health Care Needs program is affiliated with the Maine Department of Health and Human Services and the Maine Center for Disease Control & Prevention.

Katie Beckett is one MaineCare option for children under 18 with serious health conditions. If a child meets the rules for this option, that child may be eligible for MaineCare’s full benefits. Contact your local DHHS office if you have questions about the Katie Beckett benefit and ask to speak with the Katie Beckett Eligibility Specialist.

Consumers for Affordable Health Care (CAHC) has worked to protect the rights of health care consumers in Maine. This nonprofit, nonpartisan organization is committed to helping all Maine people obtain quality, affordable health care with activities that include research, advocacy, education, and consumer assistance.

EDUCATION

The Maine Department of Education is committed to shaping an education system that meets the needs of all learners and providing additional support to those who require it. Ensuring that students with special needs succeed in their learning, the Office of Special Services oversees early intervention services to eligible children age birth to under age three and their families (provided under IDEA, Part C) and Free Appropriate Public Education to eligible children age three to 20.

The Office of Special Services, part of the Maine Department of Education/Special Education Services, is responsible for the state’s oversight and support for the delivery of all special education services provided in Maine under the federal Individuals with Disabilities Education Act (IDEA). This includes early intervention services to eligible children age birth to under age three and their families, provided under IDEA, Part C, and Free Appropriate Public Education to eligible children age three to 20.

A guide to Special Education in Maine (online book). Chapter 11 has information on a 504 plan for children with special medical needs.

The Child Development Services system provides both Early Intervention (birth through two years) and Free Appropriate Public Education (for ages three through five years) under the supervision of the Maine Department of Education.

Grahamtastics Connection A nonprofit program that provides laptops and Internet access to connect chronically ill children to their world, particularly vital for those missing school due to hospitalization or treatment schedules.

TRAVEL AND ACCOMMODATIONS FOR PATIENTS

Angel Flight Northeast
1-800-549-9980 arranges free flights for those requiring access to medical care.

Arbor House Located near Central Maine Medical Center in Lewiston, Arbor House provides lodging for patients and their families. For more information about the Arbor House, call 207-795-2398.

Hope Lodge, Boston, MA offers a free place to stay for patients who travel to Boston for treatments (through American Cancer Society 1-800-227-2345).

 

*Courtesy of www.atypicalhus.org, Linda Burke, founder