Legal & Advocacy

Established in 2001, this coalition seeks to bring together and strengthen the voices of the growing number of  Kentuckians (874,000-plus) who are identified as having a disability which interferes with activities of daily living. The 874K Disabilities Coalition is comprised of organizations representing individuals with disabilities, their family members, advocates, providers and concerned citizens. The advocacy events sponsored by 874K are held in Frankfort during the legislative session with the goal of giving individuals affected by disabilities the opportunity to meet the Governor and key Cabinet officials, their state legislators and staff, and the media.

Ability360 is a 501 (c)(3) non-profit corporation.  Through its comprehensive programs, Ability360 touches the lives of individuals with disabilities and addresses the disability concerns of their family members, co-workers and employers.

Mission Statement

Ability360 offers and promotes programs designed to empower people with disabilities to take personal responsibility so that they may achieve or continue independent lifestyles within the community.

Ability360 is one of five Centers for Independent Living in Arizona, and the largest Center in the state. Ability360 advocates personal responsibility – by, and for, people with disabilities – as a means to independence.  Programs are designed to help consumers achieve self-sufficiency. In addition to the five core service areas, Ability360 provides and promotes numerous other programs and services that help consumers achieve an independent lifestyle.

Ability360 Programs and Services:

• Individual & Systems Advocacy
• Information & Referral
• Employment Services
• ADA Services
• Counsel
• Empowering Youth in Transition
• Home Modifications
• Social and Recreational Opportunities
• Home Care Services
• Sports, Fitness, and Health & Wellness Programs

Access Services provides behavioral health services, children & family services, and intellectual disability and autism services for 14 counties in eastern Pennsylvania. Our mission is to empower and serve people in need of specialized supports by providing innovative services that improve their ability to live fulfilling lives in the community.

Achieva advocates for, empowers, and supports people with disabilities and their families throughout their lives.

Programs & Services

• Employment: Supported employment uses person-centered tools to help people secure and keep a job in a field they desire to work in while offering benefits counseling to ensure vital government benefits are maintained.
• Housing: Achieva provides customized living options based on the needs and wishes of the person with a disability and their family. Whether you are looking for support in your current home, living arrangements with a group of roommates, or a home of your own, Achieva can help.
• Early Intervention: If you are concerned about your child’s development or you have been asked to select a provider for early intervention services, choose Achieva. Achieva Early Intervention has supported thousands of families for over 45 years as a trusted leader serving Allegheny County, Washington County, and Westmoreland County.
• Money Matters: Whether you’re looking to protect your assets, seek financial assistance through a grant program or plan for the future.
• Family Support: With 70 years of experience, and employees who understand the needs of families, Achieva offers a variety of services to make your life just a bit easier.

Advocacy & Benefits Counseling for Health, Inc. (ABC for Health), is a Wisconsin-based, nonprofit public interest law firm that promotes health equity and social justice. ABC for Health is dedicated to ensuring health care access for children and families. ABC for Health’s mission is to provide health care consumers with the services and support they need to navigate a complex health care financing system.

Clients and client referrals can call our office at (608)261-6939 or email us at [email protected]. Our team will triage the contact and promptly reply.

American Bar Association Free Legal Answers is a virtual legal advice clinic in which qualifying users can post a civil legal question to be answered by pro bono attorneys licensed in their state. Question topics include family, divorce, custody, housing, eviction, homelessness, consumer rights, financial, work, employment, unemployment, health and disability, civil Rights, income maintenance, juvenile and education law.

By using this website, you are asking a lawyer to give you legal help on your specific legal questions. They will be your lawyer for this limited purpose and will not do anything for you other than provide this help. The lawyer will answer your questions through the website and does not have to separately email you an answer or have a phone call or meeting to answer your questions. If the lawyer leaves your question open for a response from you, you will have 10 days to reply before the question closes. When the lawyer is finished answering your question, the lawyer will no longer be your lawyer.  If you have a court date or you need to file something with the court by a specific date, a lawyer may not answer your question in time.  You should keep looking for a lawyer while you wait to see if a lawyer will answer your question. Unfortunately, not all questions posted to the site will receive an answer. If an attorney cannot assist you, an administrator will notify you. You can use the website to ask 3 different legal questions per year.  You can’t create a new account to ask additional questions.  You must meet our rules every time you use the website.

Eligibility

You can use this website IF all of these are true for you:

• Your income is low for a family the size of yours.
• The value of your checking account, savings account, stocks or bonds are low.
• You aren’t in jail or prison.
• Your legal problem isn’t related to a criminal charge.
• You don’t already have a lawyer to help you with your legal problem.
• You are an adult.

ADAPT is like no other organization of which you may be a member. From the national to the local level, ADAPT has an informal structure. There are no money dues, no membership cards.

How do you join? To become involved with ADAPT you must have an active interest in the issue of changing the long term care system, getting people attendant services in the community and getting folks out of nursing homes and other institutions. The key word is active.

ADAPT is an activist organization. This means you are willing to give your time and energy to bring about change in the long term care system and to free our people.

The only dues are the ones you pay in blood, sweat and tears, but the dignity and pride you receive in return can not be valued. When you join ADAPT you are joining one of the finest groups of wild and weird ones you can imagine.

The national organization is made up of local groups and individuals who want to be part of ADAPT and are willing to fight for accessibility and community-based attendant services. Groups cover cities, states, regions but there are many lone warriors out there too.

Once you come to an action, all the pieces will start to fall into place. You will meet folks with a vision of equality, freedom and justice so strong they will make your heart sing!

ADAPT holds training to help form local groups and share with folks the strategies, information and techniques we use. We encourage you to come to one of these training or get some folks together and help us organize one in your neck of the woods.

Founded in 1921, the American Foundation for the Blind (AFB) is a national non-profit organization that creates a world of no limits for people who are blind and low vision. AFB mobilizes leaders, advances understanding, and champions impactful policies and practices using research and data. 

ASGCT was established in 1996 by Dr. George Stamatoyannopoulos, professor of medicine at the University of Washington’s School of Medicine, and a group of the country’s leading researchers in gene therapy. With more than 5,000 members in the United States and worldwide, today ASGCT is the largest association of individuals involved in gene and cell therapy research.

The Area Agency on Aging of Broward County (AAABC) plans, develops, coordinates, and evaluates programs; funds services; and is the prime advocate for residents of Broward County, Florida, 60 years of age or older.  The AAA also operates the Aging and Disability Resource Center which is your one-stop source of information regarding services in Broward County, Florida, for seniors, persons with disabilities, ages 18 and over, their families, and caregivers.

Participants must be 60 years of age or older for most programs except for the grandparent’s program which is eligible to seniors age 55 and older. In addition, the Alzheimer’s Disease Initiative program requires a medical diagnosis of dementia and the age criteria is 18 and older.

Our Programs 

We offer a wide range of services and resources to assist seniors in Broward County ages 60 years of age and older, and adults with disabilities age 18 and above. From meal assistance, health and wellness, to transportation services, we provide information regarding services in Broward County available for seniors.

Programs and Services Include:

• Meals and food assistance
• Health and wellness class
• Caregiver support
• Home assistance
• Legal services
• Medicare counseling/SHINE
• Senior centers
• Transportation services
• ConnectingWithU
• Alzheimer’s disease services
• Senior technology programs

The Arizona Center for Disability Law (ACDL) is a not for profit public interest law firm, dedicated to protecting the rights of individuals with physical, mental, psychiatric, sensory and cognitive disabilities.

We provide a variety of legal services to people with disabilities and/or disability-related problems. We focus primarily on those cases in which individuals have nowhere else to go for legal support.

We provide information, outreach and training on legal rights and self-advocacy, represent individuals in negotiations, administrative proceedings and court, and investigate abuse and neglect.

We are a coalition of Arizona individuals and non-profits dedicated to ensuring equal access and dignity of individuals with disabilities. Our mission is to advance the rights, choices, and values of people with disabilities through our individual and collective advocacy and education efforts. Our vision is a just world where people with disabilities have equal opportunity to participate fully in all aspects of life.

Benefits of Membership

• Collaborate with like-minded individuals and organizations to promote diversity, non-discrimination, and equity in our communities.
• Contribute your voice and vote to help drive collaborative decision-making.
• Plan and organize education and advocacy initiatives to benefit Arizonians with disabilities.
• Partner to develop and implement best practices for disability rights advocacy and full accessibility.

California Action Link for Rare Diseases (CAL RARE) is dedicated to improving the lives of rare disease patients in California. We are a coalition of rare disease stakeholders with a goal to raise awareness among the general public and decision makers regarding rare diseases. We want to bring recognition to the issues rare disease patients face and work to ensure access to physicians, treatments, and social services.

Membership

• Networking: opportunities to meet and share ideas with others in the rare disease community
• Advocacy: timely information, access to state lawmakers through caucus activities and legislative alerts
• Visibility: logo and organization information featured on website, opportunities for event sponsorship
• Information: access to news, policy briefs, and industry reports, subscription to member e-news

Membership form: https://www.calrare.org/images/72110/Alliance_CARare_MembershipForm_HR.pdf

This mission of the California Disability Services Association (CDSA) is to advocate for and strengthen member organizations to ensure public and government support of services for people with intellectual or developmental disability (IDD). CDSA is a statewide association representing more than 110 community-based organizations that support and empower people with intellectual and developmental disabilities and their families.

Our members create choices and opportunities that help clients lead the lives they choose and reach the goals they set. Their programs help clients develop skills, engage in meaningful activities, participate in community life, and live independently. Their services also help family caregivers balance life’s demands.

California Medical Billing Advocates (CALMBA) is a 501(c)(3) nonprofit, with a mission to reduce or eliminate unjust medical bills before they become crippling debt. Our officers and board of directors are ex-healthcare finance executives, professors from UCSF and UC Hastings, and healthcare lawyers providing free expert assistance.

We believe surprise and excessive medical bills are part of a structural problem due to the complex U.S. healthcare system. Unfortunately, many patients get caught up with potentially crippling bills. We believe this is unjust; and founded CALMBA to help.

We negotiate most types of medical bills, and we can help anywhere in California. We operate entirely on grants and donations to provide 100% free services to patients.

Camp Simcha

Every summer, Camp Simcha Special welcomes 230 children and teens with a wide range of multiple diagnoses for two weeks of fun, friendship, and personal growth. Non-stop activities, bunk spirit, singing and dancing encourage independence and build self-confidence. It is a unique opportunity for children fighting chronic illness to build a community of people with whom to share hopes and dreams as they grow.

Our mission is to bring childhood back to children who lost it when they were diagnosed. To do that, we mix the best of camp activities – sports, arts and crafts, swimming and boating, camp shows, special events and activities – with the leadership of trained and compassionate counselors who specialize in keeping campers laughing from early morning to late at night.

Chai Lifeline

Founded in 1987, Chai Lifeline is dedicated to helping families of seriously ill children cope with the crises and challenges of pediatric illness. We understand that illness impacts everyone in the family, and our programs offer emotional and social support to each member, the sick child, parents and siblings. Two-dozen, year-round, free programs and services create a network of help that begins with the moment of diagnosis and continue for as long as needed.

Chai Lifeline is headquartered in New York City. Regional offices in Lakewood, NJ, Chicago, IL, Fort Lauderdale, FL, and Los Angeles, CA, ensure that families across the country have access to needed programs and services. International affiliates in Israel, Canada, Belgium, and Great Britain bring Chai Lifeline to the world.

Our network of emotional, social, recreational, and financial programs is designed to create a year-round web of support around sick kids, their families and the communities in which they live. We understand that a child’s illness affects the entire family, and our programs are family-focused and family-friendly. Programs are held in facilities that can accommodate wheelchairs, walkers and other medical equipment.

In-hospital services include professional case management and advocacy; healthy, nutritious meals for patients and caregivers; transportation assistance for parents; visits by volunteers; and overnight respite that allows parents to go home for the evening.

We offer a full complement of services for children including weblinks between classrooms and hospital rooms or homes; recreational opportunities; Big Brothers and Sisters; a lending library of books, tapes, and DVDs; after-school programs for children living with loss or illness in their homes; creative arts and art therapy; counseling; trips; food packages; sibling programs; and an innovative survivor program that facilitates post-cancer life.

Families find hope and support through retreats; family respite vacations; peer-support programs for mothers or fathers; insurance advocacy; family days and holiday parties; bereavement and crisis intervention services.

All programs are free of charge, including our largest, Camp Simcha and Camp Simcha Special. We even pay transportation from campers’ home cities.

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association EIN 52-1780405) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

CAN’s Additional Caregiver Websites

Help for Cancer Caregivers 

Help for Cancer Caregivers provides information, education, and support to help cancer caregivers care for themselves and their family members. Born of a unique collaboration of organizations with the shared goal of improving health and well-being of the people who care for people with cancer, Help for Cancer Caregivers is as a stand-alone resource tailored to the oncology community.

Rare Disease Caregivers 

Rare Caregivers is a comprehensive online guide that addresses the distinct needs of family caregivers of loved ones with rare diseases. Rare Caregiver’s resources provide caregivers with tips on helping their loved one as well as themselves.

Catholic Charities of the Diocese of Raleigh traces its history of serving families in North Carolina to 1899, when a Catholic Orphanage was established in Raleigh. Since that time, the agency has expanded and adapted to the needs of the community. We serve people of all faiths or no faith tradition by providing direct services and collaborating with a range of community partners to ensure vulnerable and isolated individuals and families in our community are respected and supported. Catholic Charities core programming includes disaster services, family advancement, food pantries, and immigration legal services.

Catholic Charities Food Pantry Services operates  both traditional food pantry services at designated locations and mobile food pantry events to bring groceries into the community for those who face barriers in traveling to the food pantry location.

Food pantry services are available in the following locations:

The Center for Accessible Living (CAL) is an independent living center (ILC) serving the Louisville, Bowling Green, and Murray, Kentucky areas. CAL offers give independent living services: information and referral, independent living skills training, peer support, individuals and systems advocacy, and transition (including school-to-work transition and transition from nursing homes). It provides these services through grants from the federal Administration on Community Living and the Kentucky Department for Aging and Independent Living. In addition to these services, CAL also provides ramp-building services, employment services, housing coordination, sign-language interpreting, among others. CAL serves all disabilities and ages.

The Center for Children’s Advocacy (CCA) is a nonprofit law firm which fights for the legal rights of Connecticut’s most vulnerable children. Our mission is to protect and promote the legal rights of Connecticut’s low-income children and youth so they have equitable opportunities for good health, a quality education, and a successful transition to adulthood.

CCA provides legal representation and advocates for system reforms to ensure at-risk children’s basic needs are met and they receive appropriate services from the juvenile justice, education, child welfare, health care, and court systems.

Children’s Action Alliance (CAA) is an independent voice that identifies and eliminates barriers to the well-being of children and families and creates opportunities through partnerships and policy solutions. CAA is committed to living our values in all the actions we take and decisions we make, ensuring data and facts play a central role. We hold ourselves accountable to these commitments for the children, youth, families, and communities we work alongside.

Tuscan Location 

5049 E Broadway Blvd,
Suite 158
Tucson, AZ 85711

Children’s Law Center, Inc. (CLC), established in 1989, is a non-profit legal service center protecting the rights of children and youth to help them overcome barriers and transition into adulthood, better advocate for their needs, and successfully contribute to society. It provides individual legal advocacy to children and youth, and through public policy work, training and education, impact litigation, and juvenile defender support services, seeks to improve the systems that serve them. CLC offers services in both Kentucky and Ohio, and collaborates with other organizations within the region and nationally on a variety of topics.

Founded in 1978, CTD is the largest and oldest member-driven cross-disability organization in the state. “Cross-disability” refers to all types of disabilities and different functional needs, rather than a particular disability or subset of disabilities. CTD envisions a future where all Texans with all disabilities may work, live, learn, play, and participate fully in the community of their choice.

We focus on governmental advocacy, public awareness activities, and professional disability consulting to make Texas a leader in disability-related public policy and culture.

Founded in 1978, CTD is the largest and oldest member-driven cross-disability organization in the state. “Cross-disability” refers to all types of disabilities and different functional needs, rather than a particular disability or subset of disabilities. CTD envisions a future where all Texans with all disabilities may work, live, learn, play, and participate fully in the community of their choice.

We focus on governmental advocacy, public awareness activities, and professional disability consulting to make Texas a leader in disability-related public policy and culture.

It is our mission to create systemic change in the Commonwealth of Kentucky empowering people with developmental disabilities to achieve full citizenship and inclusion in the community through advocacy, capacity building, and systemic change.

We envision communities that fully engage, support & provide equal opportunity for every person to be valued and contributing member in their community.

We are governed and agree with the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) that:

“Disability is a natural part of the human experience​​​ that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”

All Council meetings are open to the public in accordance with the Kentucky Open Meetings Law. For a zoom link email [email protected]

Community Legal Services (CLS) is a full service civil legal aid law firm that promotes equal access to justice, which is a core American value. Approximately 50-80% of low-income Americans’ legal needs go unmet. We provide no-cost legal services to the most vulnerable in Central Florida and help them protect their families, health, and livelihood.

Nearly one million people in Central Florida  qualify for our services. Our lawyers, paralegals, and advocates provide free legal aid, helping more than 20,000 people in Central Florida each year. We help low-income people resolve urgent, non-criminal legal problems that make a difference in their everyday lives, such as protecting seniors from unlawful evictions, making sure women and children are protected from violence in their homes, and helping veterans receive financial benefits they have earned and rely on.

Are you eligible to receive our help?

CLS provides no-cost legal aid to eligible clients. Our eligibility requirements are based on where you live and whether you meet certain guidelines. To obtain free assistance, you must be eligible for services by meeting guidelines based primarily on income, assets, and household size. Generally, you will be eligible if your income does not exceed 125% of the Federal Poverty Income Guidelines. In some counties and in some cases, domestic violence and elderly clients may not be subject to income guidelines. There are also different guidelines for residents of certain counties seeking assistance with mortgage foreclosure.

Compassion and Choices improves care, expands options, and empowers everyone to chart their end-of-life journey. We develop patient-directed end-of-life healthcare demonstration projects, provide CME- and CEU-bearing training, and advance federal legislative or regulatory reforms, to:

1. Address care for those living with dementia by normalizing advance-care planning so people can pre-claim their right to access exactly the kind of care they want – nothing more and nothing less.
2. Address inequities in end-of-life healthcare including increased access and improved quality for priority populations in partnership and collaboration with the impacted communities.
3. Transform the ER experience for dying patients by broadly implementing an existing model of care that integrates palliative medicine into emergency settings, which is proven to improve outcomes, increase satisfaction, and reduce expenses for patients and providers alike.

Everyone has basic needs from stable affordable housing to medical treatment to food security.  Sometimes, legal problems prevent people from meeting those basic needs. We use our legal skills and advocacy to help clients, their families, and their communities solve urgent life problems. We focus on helping our clients secure stable housing, financial security, physical safety, healthcare, education, and personal autonomy.

We focus our work on a broad range of civil legal issues including —housing, family, public benefits, elder, children, and immigration. Our advocates work hard to ensure that we are addressing the most pressing legal needs of our clients and are ready to respond to any new issues that may arise within the most vulnerable populations in our community.

We often engage in special projects to help further our mission and protect the critical civil legal rights of low-income individuals and families. These projects can be ongoing (as our Consumer Law Project for Elders) or time limited (as our Financial Distress Research Project)

In addition to our individual client work, we coordinate and conduct over 200 legal education and outreach events each year to both our client communities and the other services agencies that serve them. These events are meant to educate the low-income community so that they know when they need assistance in enforcing their rights; and to provide service providers with information so that they can make appropriate and informed referrals to our offices.

We provide client-centered individual legal representation and counsel to our clients across a broad range of civil matters. We engage in legal and policy advocacy to ensure that our work extends beyond our immediate client base.

The mission of the Developmental Disabilities Council of Oklahoma (DDCO) is to advance communities where everyone has the opportunity to live, learn, work, and play where they choose. The Council builds partnerships to change systems to improve services, resources, and supports for Oklahomans with developmental disabilities and their families.

What does DDCO do?

Provide information and technical assistance to legislators, policymakers, and state agencies, private organizations, and advocates.

Provide assistance to individuals and  organizations to support individuals with developmental disabilities and family members to participate on advocacy boards and attend conferences.

Participate in work groups, task forces, and coalitions that affect policy making at the state and federal levels.

Fund leadership and advocacy training for advocates and field professionals.

Fund work performed by council staff or other entities that will:

• Identify individuals and their families who may need services or supports,
• Foster inter-agency collaboration and coordination resulting in improved service or support,
• Reduce or eliminate barriers to services; or redesign systems of support to better meet individual needs,
• Inform policymakers on the results of its work, policy design, best and promising practices, or other findings that may inform future policy decisions, or
• Create model projects or programs demonstrating new approaches to serving Oklahoman’s with intellectual or developmental disabilities.

Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.

Our mission is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.

Disability Rights Florida was founded in 1977 as the state’s designated Protection and Advocacy system for individuals with disabilities in the State of Florida. The Protection and Advocacy system exists to ensure the safety, wellbeing, and success of people with disabilities. Disability Rights Florida advocates, educates, investigates, and litigates to protect and advance the rights, dignity, equal opportunities, self-determination and choices for all people with disabilities.

Disability Rights Florida is a nonprofit organization that provides legal advocacy and rights protection for adults and children with a wide range of disabilities. Our staff attorneys, advocates and investigators address civil rights violations, abuse and neglect, and discrimination specifically in these areas:

• Disputes involving Medicaid eligibility including Protected Medicaid, Home and Community Based Services Waivers, and Medicare Savings Programs.
• Discrimination in housing, architectural barriers, service animals, transportation, and access to public and private programs and services.
• Abuse, neglect, and rights violations in an institution, prison, or jail.
• Rights to a least restrictive environment, privacy choice, dignity, and other basic human and civil rights.
• Barriers to a free and appropriate education, K-12 special education, transition services, and post-secondary education.
• Access to mental health and support services that provide individualized treatment including adults and students with psychiatric disabilities.
• Employment accommodations, as well as accessing, maintaining or regaining employment, and vocational rehabilitation.
• Rights to effective and accessible communication like American Sign Language and accessible print and electronic information.
• Access to services that will enable veterans with service-related injuries a successful transition to civilian life.
• Investigation of stolen or misused funds, exploitation, or neglect by representative payees.
• Voting registration, vote casting, and accessible polling places.
• Access to assistive technology and devices such as communication devices and power wheelchairs.
• Supported decision-making as an alternative to guardianship.

All services are free and confidential.

Disability Rights Maryland (DRM), a non-profit 501(c)(3) organization, is Maryland’s designated Protection & Advocacy agency (formerly known as “Maryland Disability Law Center”). DRM is federally mandated to advance the civil rights of people with disabilities. We provide free legal services to Marylanders of any age with all types of disabilities (developmental, intellectual, psychiatric, physical, sensory, learning, traumatic brain injury), who live in facilities, in the community or who are homeless.

Eligibility 

Disability Rights Maryland (DRM) may represent Maryland residents who have a disability and a legal issue within the scope of our Advocacy Services Plan. Contact our intake office at 410-727-6352 ext. 0 (ask for “intake”), Monday through Friday, between 9 AM and 5 PM to learn if we can assist you.

DRM represents children and adults of all ages with:

• psychiatric disabilities
• developmental disabilities
• sensory disabilities
• learning disabilities
• Traumatic Brain Injury (TBI)

We represent people with disabilities who:

• live in institutions
• live in the community
• are homeless

The mission of Disability Rights New Mexico (DRNM) is to protect, promote and expand the legal and civil rights of persons with disabilities. DRNM is an independent, private nonprofit agency operating federally mandated and other advocacy programs in pursuit of this mission.

DRNM’s mission reflects a belief that persons with disabilities are entitled to be treated with dignity and respect, free from abuse, neglect, exploitation and discrimination; and a belief that they are entitled to equal rights and to equally effective access to the same opportunities as are afforded to other members of society. This mission is intended to promote the independence, productivity, and full community inclusion of persons with disabilities; to promote consumer choice and consumer control of individual services; and to promote self-help through knowledge and self-advocacy skills. DRNM recognizes that persons with disabilities reflect a full range of diverse ethnic, racial and cultural backgrounds, and include traditionally unserved and underserved populations, and that the mission requires active outreach to all such populations. In carrying out its services, in its employment practices, and in the membership of its Board of Directors and designated Advisory Committees, DRNM reflects a commitment to these beliefs and values.

Toward the fulfillment of its mission, DRNM provides several basic services: information and referral about services for persons with disabilities and about their legal rights; individual case advocacy services to resolve specific disability rights problems; advocacy efforts to improve service systems and to generally promote, protect and expand the rights of persons with disabilities; and training activities to increase awareness of disability rights and increase consumer empowerment.

Disability Rights North Carolina is a legal advocacy agency that fights for the rights of people with disabilities in North Carolina. We handle cases involving discrimination, abuse and other rights violations. All of our services are at no cost to North Carolinians with disabilities. We are a private, independent, 501(c)(3) nonprofit and a member of the National Disability Rights Network.

DRNY is the Protection & Advocacy System and Client Assistance Program (P&A/CAP) for persons with disabilities in New York State. As the P&A/CAP for New York, DRNY advocates for the civil and legal rights for New Yorkers with disabilities.

DRNY provides free legal and advocacy services to individuals with disabilities. Working tirelessly to protect and advance the rights of children and adults with disabilities, DRNY is committed to enabling those we serve to exercise their own life choices and fully participate in community life.

Other Offices: 

25 Chapel Street, Suite 1005
Brooklyn, New York 11201

44 Exchange Blvd, Suite 110
Rochester, New York 14614

Disability Rights Ohio is a non-profit corporation with a mission to advocate for the human, civil and legal rights of people with disabilities in Ohio.

Since October 2012, Disability Rights Ohio has served as Ohio’s Protection and Advocacy (P&A) system and Client Assistance Program (CAP). It is governed by a Board of Directors, primarily consisting of people with disabilities and family members of people with disabilities.

Disability Rights Ohio is designated under federal law as the system to protect and advocate the rights of people with disabilities and as the Client Assistance Program under the Rehabilitation Act. The mission of Disability Rights Ohio is to advocate for the human, civil, and legal rights of people with disabilities in Ohio.

Disability Rights Ohio provides legal advocacy and rights protection to a wide range of people with disabilities. This includes assisting individuals with problems such as abuse, neglect, discrimination, access to assistive technology devices, special education, housing, employment, voting, community integration, and rights protection issues within the juvenile and criminal justice systems.

Disability Rights Ohio administers the following programs:

• PROTECTION AND ADVOCACY FOR ASSISTIVE TECHNOLOGY (PAAT)
• CLIENT ASSISTANCE PROGRAM (CAP)
• PROTECTION AND ADVOCACY FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES (PADD)
• PROTECTION AND ADVOCACY FOR VOTING ACCESSIBILITY (PAVA)
• PROTECTION AND ADVOCACY FOR INDIVIDUAL RIGHTS (PAIR)
• PROTECTION AND ADVOCACY FOR INDIVIDUALS WITH MENTAL ILLNESS (PAIMI)
• PROTECTION AND ADVOCACY FOR BENEFICIARIES OF SOCIAL SECURITY (PABSS)
• PROTECTION AND ADVOCACY FOR INDIVIDUALS WITH TRAUMATIC BRAIN INJURY (PATBI)
• VICTIMS OF CRIME ACT (VOCA)
• STRENGTHENING PROTECTIONS FOR SOCIAL SECURITY BENEFICIARIES ACT
• WORK INCENTIVES PLANNING AND ASSISTANCE (WIPA)

Programs: https://www.disabilityrightsohio.org/programs

Resource Center: https://www.disabilityrightsohio.org/resource-centers

DLAC is a coalition of organizations and law firms in Northern California working together to offer free legal services to the communities in the aftermath of  natural disasters.  Survivors of disasters such as wildfires face a wide variety of legal and financial needs ranging from insurance claim assistance to requests for government programs such as FEMA assistance.  Visit the DLAC website to learn about the free legal services they currently offer in addition to resources on recent and active disasters.

Issues DLAC can help with: 

• Homeowner
  • Issues with paying your rent or mortgage
  • Housing subsidies and public housing
  • Eviction
  • Other problems with your apartment, mobile home, or house
• Consumer
  • Issues people face regarding money
  • Insurance
  • Consumer goods and contracts
  • Taxes
  • Document replacement
  • Price gouging and small claims about quality of service
• Employment
  • Discrimination and harassment
  • Worker’s compensation
  • Workers rights
  • Safety getting paid
  • Pensions
  • Being fired, and more
• Disaster Assistance
  • Issues related to natural disasters and public health emergencies
  • Includes getting benefits and assistance
  • Clearing title to property
  • Dealing with insurance
• Landlord/Tenant
  • Issues with paying your rent
  • Landlord-tenant issues
  • Eviction
  • Problems with your apartment, mobile home, or house

The Education Law Center’s mission is to ensure access to a quality public education for all children in Pennsylvania. We pursue this mission by focusing on the most underserved students: children living in poverty, children of color, children with disabilities, children in the foster care and juvenile justice systems, children experiencing homelessness, English learners, LGBTQ and gender-nonconforming students – and many who are at the intersection of these identities.

Exceptional Lives is a personalized disability information platform for families, caregivers, and professionals. We empower and support families by providing trustworthy, easy-to-follow information in plain language on how to access programs and services. We promote self-help by equipping users with tools to find resources and take action to help their children thrive.

Exceptional Lives encourages and guides families and providers caring for children with disabilities by offering information, advocacy and skill-building tools, and connections to other caregivers. We support family resiliency through clear, compassionate guidance grounded in our own personal experience.

We envision a world in which families raising children with disabilities become effective advocates for their children because they are informed about and able to access the public resources and benefits they need to help their children thrive.

Our mission is to improve the lives of individuals and families facing hereditary cancer. FORCE accomplishes this mission by providing expert-reviewed information to help people make informed medical decisions. Our supportive community of peers and professionals ensures no one faces hereditary cancer alone. FORCE is a champion, advocating for access to care, and better treatment and prevention options.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.

As one of Arizona’s pioneer social service agencies, Friendly House was first established in 1920 as part of a local initiative to assist immigrants in acquiring the citizenship, education and literacy skills necessary to acculturate into the United States. In 100+ years, Friendly House has evolved into a multi-service organization with wide-ranging programs aimed at addressing the pressing needs of our diverse community: Education, Workforce Development, Family Support, Basic Needs and Immigration.

Programs 

• Academia del Pueblo
• Adult Education
• College & Career Readiness
• Emergency Support Services
• Early Childhood Development Center
• Parent Education and Drug Prevention
• Workforce Development

Resources for All Ages in the state of Alabama

The Hawai’i Health and Harm Reduction Center serves Hawai’i communities by reducing the harm and fighting the stigma of HIV, hepatitis, homelessness, substance use, mental illness, and poverty in our community. We focus our efforts on those disproportionately affected by social determinants of health, including but not limited to: people living with and/or affected by HIV, hepatitis, substance use, and the transgender, LGBQ and the Native Hawaiian communities. We foster health, wellness, and systemic change in Hawai’i and the Pacific through care services, advocacy, training, prevention, education, and capacity building.

Programs offered include case management, overdose prevention, food access, and clinical services.

Helping Our Women (HOW) is a resource center for women living with chronic or life threatening conditions. We serve the Outer Cape community from Provincetown to Eastham.

HOW wants to help. To ease the stress of everyday life, HOW provides support services to women in need, so they can focus on wellness and well-being. Women with a chronic health condition who reside in Eastham, Wellfleet, Truro or Provincetown are eligible to receive support. We do not discriminate on the basis of income, marital status, age, race, ethnicity, religion or immigration status.

For more information on programs: https://helpingourwomen.org/our-programs/

To request help from HOW: https://helpingourwomen.org/get-help/#forms

Housing Assistance Corporation offers housing programs and services throughout Cape Cod, Martha’s Vineyard, and Nantucket. We operate four family homeless shelters; provide outreach services to people living on the streets and in the woods; offer financial assistance to prevent homelessness; build new housing; manage nearly 1,200 rental vouchers; and provide foreclosure and reverse mortgage counseling as well as financial literacy and housing advocacy workshops.

Our vision is a community in which everyone is stably housed so that they can live the life they want to live and contribute to a thriving year-round community.

Our mission is two-fold: to deliver housing and services that meet the needs of our local community and limit our impact on natural resources; and to engage in responsible economic development that generates jobs, stabilizes housing and strengthens the community.

The mission of Housing Equality Center of Pennsylvania is to advance fair and equal access to housing opportunities for all Pennsylvanians. The Housing Equality Center’s service area includes the Pennsylvania counties of Bucks, Chester, Delaware, Lehigh, Montgomery, Northampton, and Philadelphia. The organization’s education and technical assistance programs support housing professionals throughout Pennsylvania.

The Housing Equality Center offers a variety of programs and services to the general public to ensure that consumers have access to housing and understand their rights under fair housing laws. Additional programs and services are available to ensure that housing professionals understand and comply with fair housing laws. The Housing Equality Center provides:

• Counseling and conducts testing investigations to help housing discrimination victims.
• Education and training programs for housing professionals, nonprofits, housing authorities, and others to promote compliance with fair housing laws and to prevent discrimination.
• Publications, fact sheets, and resources to educate the public and housing professionals about fair housing.

Idaho Legal Aid Services, Inc. is a nonprofit statewide organization dedicated to providing equal access to justice for low-income people through quality advocacy and education. We are Idaho’s largest nonprofit law firm with seven regional and two satellite offices, three toll-free legal advice lines, and a website with legal forms and educational content. Our mission is to provide quality civil legal services to low income and vulnerable Idahoans.  For many, we provide their only access to our judicial system. Every year Idaho Legal Aid Services helps thousands of Idahoans with critical legal problems such as escaping domestic violence and sexual assault, protecting abused and neglected children, preserving housing, helping vulnerable seniors and stopping discrimination. Our Indian Law Unit provides legal help focused on Idaho’s Indian Reservations. The Migrant Farmworker Law Unit provides services tailored to the needs of Idaho’s migrant population.

Make sure you have this information ready before you apply:

1. Your name, address and county you live in;
2. The name of the person, business, or organization causing your legal problem (if any);
3. The sources of all your total household income and the amount your household gets each month from each source. Household income means income for you and anyone else who lives in your household; and,
4. The amount of money in all your bank and/or retirement accounts.

Apply for Legal Assistance: https://www.idaholegalaid.org/node/2413/apply-legal-assistance

Founded in 1985, Idaho Parents Unlimited, Inc. (IPUL) is a statewide organization which houses the Idaho Parent Training and Information Center, the Family to Family Health Information Center, Idaho Family Voices and IPUL Arts. Idaho Parents Unlimited, Inc. envisions inclusive and accessible communities, services, education, and opportunities for children and youth with disabilities and/or unique and special healthcare needs. Idaho Parents Unlimited works with parents, family members, and caregivers of children and youth with disabilities and special health care needs and the professionals who are a part of their lives. While our office is in Boise, we work statewide using technology, and we frequently travel to all regions of the state throughout the year. We assist families who have children of any diagnosis from birth to age 26.

What we do:

• Provide individual assistance to families through calls, emails, and in-person meetings
• Provide options that you may have to resolve any individual issues
• Present monthly training workshops and webinars on a variety of topics
• Provide special request workshops at community events and/or conferences as well as for parent or professional groups
• Advocate for systems, programs, policies, and rules that have an impact on Idaho families
• Provide effective advocacy training and information for families and youth to best advocate for themselves.
• Provide Parent Leadership Development training annually to build on a growing list of parent mentors who can amplify our work across the state.
• Provide scholarships to parents to attend conferences or events related to your child’s disability.
• Provide arts education through our in-school/community center residencies and Work of Art Programs
• Listen and provide support

What we do NOT do:

• Advocate on behalf of an individual child or family
• Attend IEP meetings
• Tell you what you should do
• Provide legal assistance
• Endorse or promote specialty care providers, legal services, or schools/districts
• Provide general parenting training (ie: court ordered classes)
• Provide 24-hour crisis services (we are not a crisis agency)
• Provide routinely scheduled art classes

The Iowa Department of Human Services’ (DHS) goal is to maximize positive outcomes with dependent adults by protecting well-being, empowering independence, and supporting quality of life.

Dependent Adult Protective Services (APS) receives reports of abuse, neglect, and exploitation of dependent adults. Concerns of possible abuse are evaluated or assessed by DHS. The program endeavors to provide for the safety and protection of adult who are, or suspected to be, victims of maltreatment. The program endeavors to make referrals to assist alleged victims and their families in locating community supports to meet their needs.

Kentucky Education Rights Center (KERC) is a private organization that works with families of children ages 3-21 who have physical and mental disabilities. KERC strives to ensure that each child receives the necessary resources from their public school system to obtain a free and appropriate public education. KERC helps families to navigate the IEP process.

This coalition was established in 1982 by nine mental health organizations to support collaboration and to speak with one advocacy voice for the prevention and treatment of mental illness and the promotion of mental health. In 2003, the Kentucky Mental Health Coalition (KMHC) membership approved a reframed and broadened mission: To bring together the collective voices of consumers, family members, advocates, and providers to educate the public, to engage policy makers, and to increase the resources necessary to address the Commonwealth’s human service needs while improving the mental health and well-being of all Kentuckians. Voting membership in KMHC is limited to organizations, 80 of which are current members; individuals may also join. The member organizations pay annual dues which vary as to whether they are statewide or local and whether they are advocacy organizations, service delivery agencies, or professional associations.

Kentucky Protection and Advocacy is the designated protection and advocacy system in Kentucky. Kentucky Protection and Advocacy is an independent state agency that protects and promotes the rights of Kentuckians with disabilities through information and referral, technical assistance, education and training, and legal advocacy.

Who can call Kentucky Protection and Advocacy?

Anyone can call Kentucky Protection and Advocacy. You do not have to be receiving disability benefits or be a U.S. citizen to receive assistance.

What happens when I call Kentucky Protection and Advocacy?

You will be contact by an advocate or attorney who will contact you within three (3) business days from the time you contacted our office. After hearing about your situation, the advocate or attorney will either 1) advise you on how to solve the problem you’re calling about, or  2) refer you to a person or agency who can further assist you, or 3) refer your situation onto a Kentucky Protection and Advocacy attorney supervisor to decide if Kentucky Protection and Advocacy and represent you.

When should I call Kentucky Protection and Advocacy?

You should call Kentucky Protection and Advocacy when you:

• Feel like you are not being treated fairly because of your disability
• Have trouble accessing goods/services needed to help with your disability
• Have trouble with Special Education in public schools
• Feel like you are not being treated fairly in a psychiatric hospital
• Want to know what your protected rights are in certain situations
• Want to know how to be an advocate for yourself
• Have received denial for a requested accommodation
• Want to know how to protect your rights
• Want to know more about voting and polling place accessibility
• Want information on employment and keeping Social Security benefits
• Have issues regarding Medicaid Waivers
• Have questions about guardianship of adults with disabilities
• Have questions about services that may be available to you
• Have questions about a situation and don’t know where else to turn

Kentucky Protection and Advocacy is not able to assist with the following issues or areas: 

• Non-disability civil rights cases
• Divorce
• Child custody
• Getting certain benefits: Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Veterans Affairs (VA) benefits
• Criminal cases (we can provide technical assistance to you and your attorney, though)

KY-TASH supports the inclusion and full participation of children and adults with disabilities in all aspects of their communities as determined by personalized visions of quality of life.

Our KY-TASH vision is that people with significant disabilities in Kentucky will:

• Lead fulfilled lives with high expectations of self and from others
• Have good jobs that are challenging and fit their talents and interests
• Be welcomed by communities of faith
• Have adequate health care and support
• Have family and friends
• Have sufficient flexible funding
• Be respected and supported for the unique individual each person is
• Have support to live in typical neighborhoods and homes

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

LawHelpCA has been prepared for general information purposes only. It does not provide direct legal advice but can connect you to legal aid organizations and referral services.

What is LawHelpCA?

• LawHelpCA is California’s official and free legal resource.
• Reliable information about common legal issues, written by reputable sources on 16 general topics and over 140 specific subtopics
• Updated directory of legitimate and pre-screened organizations that offer free or low-cost legal advice and representation

Legal Aid of North Carolina is a statewide, nonprofit law firm that provides free legal services in civil matters to low-income people in order to ensure equal access to justice and to remove legal barriers to economic opportunity. With a holistic approach, Legal Aid of North Carolina provides free legal help when people need it most because everyone deserves an advocate when their home, health or livelihood is on the line.

List of offices: https://legalaidnc.org/offices/

Legal Services of Northern Virginia (LSNV) is a full service, nonprofit law firm that serves clients throughout Northern Virginia. It was established in 1980 by consolidating several existing local legal aid organizations into a regional service program. LSNV is a non-profit 501(c)(3) organization, federally funded by Legal Services Corporation, local governments in Northern Virginia, foundations, the private bar, and other donors. The mission of LSNV is to provide access to justice for disadvantaged individuals and communities.

LSNV also provides limited legal services, including advice and counsel and referrals to individuals residing in the following Virginia counties and cities:  Caroline, Culpeper, Essex, Fauquier, King & Queen, King George, King William, Lancaster, Madison, Northumberland, Orange, Rappahannock, Richmond County, Spotsylvania, Stafford, Westmoreland and City of Fredericksburg.

LSNV opens the door to justice by providing services in a variety of substantive civil legal areas, including: family law, housing law, elder law, public benefits claims, access to health care, child advocacy, consumer law and AIDS/HIV issues. Staff and volunteers provide legal advice, brief service, and representation in administrative hearings and in court, as well as community legal education, and advocacy before local and state governmental entities, all without charge  to our clients.

The Little Miss Hannah Foundation’s mission is to help enhance the quality of life for young children diagnosed with rare, life-limiting, or undiagnosed complex medical needs, as well as children who have been placed in hospice or palliative care. The foundation also gives parents the necessary tools and financial assistance to empower them to meet their child’s unique medical and lifestyle needs, as well as provide support resources and special attention for their other children. We also work to provide support groups for all members of the family by providing fun, family-focused and sibling-focused events and activities.

Programs

1. Medical-Therapy Equipment Assistance
2. College Scholarship
3. Childhood Rare Disease Advocacy
4. Family Support and Activities

Lone Star Legal Aid is a 501(c)(3) nonprofit law firm with a rich and deeply respected history of advocacy on behalf of low-income and underserved populations, beginning with the Houston Legal Aid Clinic in 1948 and East Texas Legal Services in 1977.

We have 14 offices and cover many practice areas including consumer, landlord tenant, foreclosure, public benefits, environmental justice, disaster recovery, tax relief, fair housing, family law, domestic violence, sexual assault, crime victim rights, veterans benefits, and more.

The Maryland Developmental Disabilities Council has been creating change to improve the lives of people with developmental disabilities since 1971. We focus on children, family, and adult issues. The Council is an independent state agency. We are led by people with developmental disabilities and family members of people with developmental disabilities.

Mental Health America of Central Carolinas (MHA) provides mental health programs in Mecklenburg and Cabarrus counties and surrounding areas in North Carolina. Our programs seek to raise awareness, provide support, and break stigmas associated with mental illness. MHA provides family support services to parents of children with behavioral, emotional, or mental health needs; peer support for adults living with chronic mental illness; and mental health education and preventative trainings to the broader community. MHA’s programs bring together mental health consumers, parents, advocates, and service providers to address systemic issues impacting mental health. MHA’s programs focus on prevention, education, and advocacy. Our work is guided by the B4Stage4 philosophy, the premise that just like cancer, heart disease, diabetes, or other physical conditions, early diagnosis and treatment is key to improving mental health and recovery.

The National Alliance for Caregiving was founded in 1996. Led by our founder Gail Gibson Hunt, a group of national organizations came together to meet the needs of caregivers in an aging America. The National Association of Area Agencies on Aging, the American Society on Aging, the U.S. Department of Veterans Affairs – Office of Geriatrics and Extended Care, Glaxo Wellcome, and the National Council on Aging worked together to create a new association that could address the public policy needs of families and quantify the impact of one of the largest unpaid workforces in our society.

The National Association of Specialty Pharmacy (NASP) is a 501(c)(6) non-profit trade organization and is the only national association representing all stakeholders in the specialty pharmacy industry. The mission of the National Association of Specialty Pharmacy (NASP) is to elevate the practice of specialty pharmacy by developing, delivering and promoting continuing professional education and specialty certification while advocating for public policies that ensure patients have appropriate access to specialty medications in tandem with critical services. NASP supports a free market healthcare system in which all specialty pharmacies compete on the same fair and level playing field, because that is in the best interest of the patients we collectively serve. NASP is committed to working with all stakeholders and policymakers to ensure that all patients have access to the life-saving medications they need and the high touch patient care and support services they deserve from the pharmacy of their choosing.

The mission of the North Carolina Rare Disease Network is to improve the lives of millions of people with one of the 7,000 devastating rare diseases by creating a unique collaborative partnership between patients, providers, scientists, agencies and industry.

The Justice Center for the Protection of People With Special Needs (Justice Center) was established in 2013 by the Protection of People with Special Needs Act. The agency was created to restore public trust in the institutions and individuals charged with caring for vulnerable populations by protecting the health, safety, and dignity of all people with special needs.

The Justice Center has jurisdiction over more than 1,000,000 individuals receiving services across six State Oversight Agencies.  The agency operates a toll-free hotline 24 hours a day, seven days a week for receiving reports of allegations of abuse and neglect.  The Justice Center is authorized to investigate these reports and pursue administrative sanctions against staff found responsible for misconduct.  The agency’s Special Prosecutor/Inspector General works with local district attorneys who prosecute criminal offense allegations.  The Justice Center also issues recommendations for corrective actions.

In addition, the agency provides support services for individuals and guardians as well as issues abuse prevention materials statewide.  The Justice Center Advisory Council aids the agency in developing policies, programs and regulations.

The New York State Rare Disease Workgroup was created in response to legislation passed in New York State (Article 27-L of the Public Health Law). The purpose of the workgroup is to identify best practices that could improve the awareness of rare diseases and referral of people with potential rare diseases to specialists, and to evaluate barriers to treatment, including financial barriers on access to care. The Department will prepare a report based on the workgroup’s recommendations.

Members

Workgroup members represent individuals with expertise in rare diseases, including physicians, nurses and other health care professionals with experience researching, diagnosing or treating rare diseases; members of the scientific community engaged in rare disease research; representatives from the health insurance industry; individuals who have a rare disease or caregivers of a person with a rare disease; and representatives of rare disease patient organizations.

For over three decades, NYSSCAN has been providing an array of support services and programs to children, caregivers, families, and individuals affected with sickle cell disease, thalassemia, and the trait in the Tristate and Metropolitan areas. All of our services are provided FREE OF CHARGE.

We Can Help With:
Information, referrals, and other assistance linking families and individuals to services fitting their needs

Information about sickle cell disease, thalassemia, and the trait

Referrals to hospitals and other healthcare facilities

Referrals and linkages with governmental agencies, community organizations, immigration, and legal services

Hospital/Home visits

Advocacy for patients between their hospitals and providers

Help to sponsor a child for summer camp/respite care

Referrals to family or individual consultation and counseling

Entitlements: SSA, SSI, Medicaid, SNAP (formerly Food Stamps), and other governmental programs

Referral to GED, College, 504/IDEA, job readiness, technical training, life skills, and enrichment programs

Assistance to families in need

Family financial assistance (when funds are available)

The prescription financial assistance program

Clothing assistance

Goods and services

The Rare Action Network^®, powered by the National Organization for Rare Disorders (NORD), serves to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state-based initiatives across the United States. We stand for equitable access to timely diagnosis, treatment, and care for every person impacted by a rare disease.

North Carolina Families United is the Statewide Family Network and the State Chapter of the National Federation of Families. NC Families United is a family support and advocacy organization for children and youth with mental health and/or intellectual and developmental diagnoses.

What We Do 

Helping the Community 

• Link families to State and community partners for the purpose of improving the lives of children, youth, and families with emotional, behavioral, or mental health needs.

Reinforcing our Commitment

• Focus active attention on the unique strengths and needs of these children and their families by educating and advising policymakers, service providers, other advocacy organizations.

One Step at a Time 

• Actively promote policies and procedures that serve the best interests of these children, youth, and their families through work with State and local officials. Actively promote, model, and adhere to the values and principles of System of Care.

The Northern Regional Center for Children and Youth with Special Health Care Needs (CYSHCN) is a resource for families with children (0-22) who have any type of disability or need help finding a diagnosis.

We also offer parent support with loans from our resource library, scholarships to training and conferences, peer support from staff with lived experiences, and referrals to our statewide Parent-to-Parent support network. The Northern Regional Center office is located in Wausau, Wisconsin and supports 15 counties and 6 tribes. Staff are available to help problem-solve, provide information or make referrals to community, state, and national resources. We regularly travel in the area so can drop off resources, meet for coffee, or host a training in your home community.

Educational support can be found at this link: https://northernregionalcenter.org/information-resources/your-childs-education/

Medical Providers/Physicians can make direct referrals using this form available in English and Spanish: www.dhs.wisconsin.gov/forms/f0/f01238.pdf

The Ocean State Center for Independent Living is a non-residential, consumer-driven, community-based, cross-disability, non-profit organization. OSCIL was established in 1988 to provide a range of independent living services to enhance, through self-direction, the quality of life for persons with disability and to promote integration into the community. OSCIL is governed by an active Board of Directors comprised largely of persons having disabilities, who play a major role in setting policy and programming.

Our core services include advocacy, peer support, independent living skills training, information & referral, and transition services.

Main Office: 1944 Warwick Avenue, Warwick, RI 02889

Oscil North: 175 Main Street, Pawtucket, RI 02860

Post Road: 1800 Post Road, Warwick, RI 02886

​​​​​​​​​​​​The Office for Children with Special Health Care Needs (OCSHCN) provides comprehensive care to children and youth with special health care needs who:

• are KY residents
• are younger than 21
• meet medical eligibility
• meet financial eligibility

Services 

The OCSHCN can provide the following services for children with special health care needs through on-site clinics, satellite clinics, or financial assistance:

• Medical services
• Therapy services
• Financial assistance for treatment regarding asthma, cystic fibrosis, rheumatology, or spina bifida
• Hearing loss services
•  Support services regarding transportation, foreign language interpretation, or transitioning services

OCSHCN does not cover primary medical care. All services must be authorized in advance by your care coordinator.

The Mission of the Oklahoma Disability Law Center, Inc. is to protect, promote and expand the rights of people with disabilities.

What We Do

Information/Referral: We can answer questions about the legal rights of persons with disabilities, and services they may be entitled to. We can also explain where to apply for disability services or how to get more information.

Client Advocacy: People with disabilities may be denied services or discriminated against; their rights may be violated; they may be subject to abuse or neglect. We can negotiate on an individual’s behalf to resolve these problems, or support their own self-advocacy efforts. In some cases, we can represent persons with disabilities in a hearing or in court.

Systemic Advocacy: Some problems affect large numbers of people with disabilities, and can best be resolved through changes in funding, policies, regulations, or law. ODLC works with state agencies and the state legislature, or takes legal action, to improve and expand disability services or legal rights.

Training: We provide workshops and presentations on legal rights issues, and on how to obtain benefits or services.

Investigation and Monitoring: As the federally-mandated Protection & Advocacy (P&A) service for Oklahoma, we have access to facilities to conduct investigations, provide information and training, and monitor compliance with rights and safety. Facilities can include hospitals, community living arrangements, board and care homes, juvenile detention facilities, jails, prisons, schools, and more.

The Oklahoma Family Network (OFN) informs and connects individuals with special health care needs and disabilities, their families, and professionals to services and support in their communities.

Our services are designed for the family of any child who has:

• spent time in the NICU or was born premature
• physical disabilities
• cancer
• rare or undiagnosed conditions
• Autism
• Cerebral Palsy
• Cystic Fibrosis
• Down Syndrome
• mental health diagnoses
• behavioral health concerns

Since 1963, the PA Elks Home Service Program has been helping to improve the quality of life for thousands of children and adults through Pennsylvania. We provide support and advocacy services to individuals of any age who have developmental disability.

Services are provided: 

• By a nurse and/or service coordinator
• Without discrimination
• To Pennsylvania residents
• At no charge
• In the person’s home environment

Some ways the Elks Home Service Program can help: 

• Provide in-home service coordination services
• Advocate for an individual’s legal and human rights
• Provide information regarding resources and services available
• Assess needs and help to access equipment
• Advocate for appropriate educational services
• Assist with finding activities within the community
• Offer instruction regarding home care
• Provide emotional support
• Help with vocational goals
• Assist with residential options
• Provide referrals to appropriate agencies in the community
• Interpret clinical findings and act as a liaison between healthcare providers

Who is Eligible

An individual of any age who has a developmental disability. This is a disability that is manifested before the person reaches 22 years of age. It may result in physical or mental delays or in a combination of both. Services can continue through a person’s lifetime if needed.

Making a Referral

Referrals can be made by health care professionals, school personnel, community agencies, family members or friends. Permission must first be obtained from the individual or family.

PALawHELP.org is a guide to legal information and free civil legal services for low-income persons and seniors in Pennsylvania. Here you can locate information on a variety of legal issues, as well as information on how to contact programs providing legal assistance in Pennsylvania. This includes basic eligibility and contact information for the programs proving free legal assistance in Pennsylvania. This guide is a free service which is made possible through a grant from the Legal Services Corporation (LSC) and the ongoing support of Pennsylvania Legal Aid Network, Inc. and its member programs.

What is the Collective?

The Palmetto Health Collective was formed to bring together patient advocacy organizations in South Carolina to share and collaborate on the work and missions of our organizations, including our success and the barriers we face in serving our members. This is a culmination of many years’ collaboration. Our desire is to better connect healthcare advocacy organizations, research universities, state government and healthcare agencies in South Carolina to address the many health-related barriers individuals and their families still face today living with chronic conditions and rare diseases. The consortium will strive to bring awareness in addressing gaps in accessing treatment and healthcare coverage, as well as other barriers, that hinder those affected within South Carolina to live quality lives.

Our Mission 

The PEAL Center is an organization of parents/family members of children with disabilities and special health care needs and persons with disabilities who educate and guide:

• Families of children and youth, ages birth to 26, who have disabilities and/or special health care needs.
• Professionals and others who work with children and youth who have disabilities and/or special health car needs.
• Youth and young adults up to age 26 who have disabilities and/or special health care needs.

The mission of the PEAL Center is to educate and empower families to ensure that children, youth, and young adults with disabilities and special health care needs lead rich, active lives as full members of their schools and communities. The PEAL Center serves families across Pennsylvania with offices in Pittsburgh and Philadelphia.

Our mission is to connect and empower families, children, and youth living with disabilities or special healthcare needs through support, education, and advocacy.

PATH Offers many programs and services to families of children with special needs: 

• One-to-one, personal support, and information by phone with our health information specialists and parent support staff.
• Support and information to moms-to-be on bed-rest, parents of premature babies, and parents of babies in the Neonatal Intensive Care Unit (NICU).
• Support, outreach, and resources to families in need of genetic information.
• Support and information on specific disabilities, including but not limited to Autism, Down syndrome, Cystic Fibrosis, Sickle Cell, Deaf/Hard of Hearing, ADHD, and learning disabilities, to help families better understand their child’s healthcare and overall needs.
• Help understanding how to navigate the healthcare system, including applying for insurance and finding medical specialists/providers in your area.
• Information and assistance applying for programs and services that may be available to children with special needs and their families in the state of Connecticut, including Birth to 3, DDS, SSI, Section 8 housing.
• Help learning how to advocate for your child with special needs, both in a medical and educational settings.
• Help understanding your child’s educational evaluations and Individualized Education Plan (IEP) and 504 plans.
• Trainings and webinars to help parents become their child’s best advocate.
• Trainings for both parents and professionals on cultural and linguistic competency.
• Educational support and advocacy. PATH is often able to assist families with educational support in the school setting, attending PPT/IEP and 504 meetings. Our goal is to help parents become better advocates for their children. We ask that parents who use this educational advocacy support participate in at least two parenting trainings with our organization. In the event that we are unable to provide educational advocacy services, parents will be provided with a list of special education attorneys in the state of Connecticut.

The mission of the Pediatric Cortical Visual Impairment Society (PCVIS) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease, or injury. The mission is restricted to matters concerning the sense of vision.

Day care for medically fragile infants and children age 0-21. Cares for children with developmental, neuromuscular & cognitive disorders, genetic disorders, and health conditions that require skilled nursing. Support services include occupational therapy, physical therapy, speech-language therapy, and an educational curriculum. Transportation is provided. As of July 2022, hours of operation are 7:30am to 5:30pm.

Pennsylvania Health Law Project (PHLP) is a 501(c)(3) non-profit legal services organization that represents Pennsylvanians who need help getting or keeping Medicaid (also known as Medical Assistance or MA). The mission of the PHLP is protecting and advancing health care rights through free legal services, community education, and systemic advocacy.

The Pennsylvania Legal Aid Network is a statewide consortium of independent legal aid programs. We coordinate the delivery of civil legal assistance to the Pennsylvanians who need it most. The Network is comprised of nine regional legal aid programs, providing legal assistance to eligible clients in every county in Pennsylvania, and six specialized legal aid programs, providing legal services in specialized areas of the law or to special groups of eligible clients.

The Pennsylvania Rare Disease Advisory Council (PARDAC) is a resource for patients, physicians, and families to help those living with a rare disease.  PARDAC was created through legislation (House Bill 239) and signed into law as Act 14 on July 7, 2017, by Governor Tom Wolf. The council consists of the secretaries of Health, Human Services, and Education (or their designees), the Insurance Commissioner (or his/her designee), and members of the public, including various health practitioners, health insurers, researchers, parents of children with rare diseases, self-advocates and others with expertise in providing care to individuals with rare diseases. The mission of the PARDAC is to improve the quality of life for all those affected by rare diseases in Pennsylvania.

The Pennsylvania School Bus Association (PBSA) was founded in 1980 and consists of over 300 school transportation contractors and industry partners who have come together to be a strong voice for school transportation safety and the school transportation contracting industry.

Our mission is to provide programs, education, and services to promote and foster the highest degree of safety in the transportation of school children and strengthen the quality of student transportation through professional management. PSBA works with many Pennsylvania organizations and government agencies to advance the mission and accomplish the goals of the membership.

The transportation of students with special needs requires extra care and attention by school bus contractors and their drivers. PSBA provides its members with the latest information on federal and state requirements as well as access to best practices for transporting these students. The PSBA Exceptional Learners Committee monitors special needs transportation issues and develops resources for PSBA members.

People First of Louisiana supports people with disabilities to empower themselves in becoming effective decision makers, to gain more independence, and enjoy life as equal citizens of the United States of America. It is a self advocacy group run by people with disabilities, for people with disabilities. Members can connect with others in their community, across the nation, and around the world.

Pfizer Rare Disease is built on innovation. We pride ourselves in stretching the limits of traditional partnership and collaborative research models by working in new and meaningful ways with innovators in government, academia, advocacy, and across the industry. We believe a networked R&D model that leverages the strengths across all sectors will drive the next generation of breakthrough therapies.

Our ongoing rare disease collaborative research in gene therapy is one example of our cutting-edge approach to developing new therapies. We are continuing to identify and engage new partners to advance our rAAV-based platform and capabilities, leading to several pre-clinical and clinical programs.

Through trusted rare disease partnerships and collaborations—and a shared urgency and relentless passion to make a difference in patients’ lives—Pfizer Rare Disease is supporting programs and initiatives that we believe can benefit the public, advance medical care, and improve patient outcomes.

Here you will find some general information on grants, funding, and other opportunities that are now available to help improve the lives of patients with rare diseases.

Pre-Health Dreamers (PHD) promotes a culture of inclusion in higher education and healthcare by working with institutions to establish equitable holistic support and processes for undocumented communities. PHD empowers and equips students to skillfully use their voices to create a meaningful connection with high education and professional programs.

PHD has witnessed first-hand the lack of resources available for undocumented students pursuing health-related professional programs, like medicine, dentistry, nursing, research, and more. Even more, PHD participants show us that the barriers from ten years ago still exist today for traditionally underrepresented communities. We are empowered to support the community and strive to change the education and healthcare system for all immigrants.

Our team provides: 

• Student advising and advocacy support through our Peer Engagement and Enrichment Program (PEEP
• National peer-support network and resources
•  Institutional advocacy in higher education and health care through our National Community Coalition (NCC)
• Community training on health care access for the undocumented and immigrant community
• A platform that elevates immigrant-friendly policy and legislation

Protect TX Fragile Kids (PTFK) is a grass-roots, non-profit organization (501(c)(4)) founded and run by parents of medically fragile Texas children.  Our stated mission is:

(a) To give a voice to Texas’ most fragile citizens; (b) To inform, educate, and support families of children with disabilities; (c) To fight for what is right for children with special medical needs and disabilities; (d) To champion public policy which supports and protects the well-being of children with disabilities and complex medical needs; (e) To monitor existing and proposed legislation impacting children with disabilities; (f) To empower families with children who have disabilities and complex medical needs to connect with elected officials in order to promote understanding of this life.

We are dedicated to advocating, educating, and informing families and elected officials alike about what it is like to provide a hospital-level of care in the home, and live with a child who has significant medical needs and requires constant care and medical intervention to stay alive. Above all, we are dedicated to advocating on behalf of the best interests of vulnerable, sick little Texans, who have no voice and desperately need someone to speak on their behalf and defend their interests. If the State of Texas is truly committed to a culture of life, then appropriate care for our state’s sickest kids must be a priority. Morally, financially and politically,  it is in the best interests of the state of Texas to protect their most fragile little citizens.

Raising Special Kids exists to improve the lives of children with the full range of disabilities, from birth to age 26, by providing support, training, information and individual assistance so families can become effective advocates for their children.

Raising Special Kids began in 1979 as a grass-roots effort of families, professionals, and community leaders determined to provide support and information for parents of children with disabilities and special health care needs. Today, Raising Special Kids serves as Arizona’s Family-to-Family Health Information Center, and as Arizona’s Parent Training and Information Center. Helping parents access information about health care, community resources, and support services so they can make informed decisions regarding their children’s care has been our mission from the beginning. We support thousands of Arizona families each year through our programs and services.

Rare & Ready: A Genetic Condition Coalition believes state policies must make sure that patients with rare or genetic conditions can get the care they need. These patients deserve access to new FDA-approved therapies as soon as they are available. We need to mitigate state Medicaid program hurdles that limit access.

Every voice matters! Share your experience and contact us to join our coalition. Help us make progress in having an impact on rare disease policies. Attend our educational and collaborative webinars on a variety of topics with experts and like-minded individuals. Rare & Ready welcomes EVERYONE to join us! Whether you are a patient, caregiver, healthcare provider, or member of a patient advocacy group, your voice matters. Together we can change Medicaid policy to get the access we need now.

The Black Women’s Health Imperative (BWHI) launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.

The Rare Disease Diversity Coalition is focused on reducing racial disparities in the rare disease community. The Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community, and industry leaders with the following goals:

• Reduce racial disparities in the rare disease community
• Identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color
• Help achieve greater equality within the rare disease community

The focus of Resilience and Community Services (RCS) is to provide essential services for Louisville residents, especially for low and moderate income populations, including: preventing homelessness; delivering Meals on Wheels; helping families build financial stability and security; operating LIHEAP to help residents stay safe and warm; making microloans to jumpstart small businesses; and supporting eight Neighborhood Places.

Resilience and Community Services’ work is focused in nine divisions including Outreach & Advocacy; Administration; Planning & Compliance, Support Services 2.0; Information & Technology; Financial Empowerment; Housing & Support; Senior Nutrition; and CSBG Direct Services.

RIPIN is a 501(c)(3), charitable, nonprofit organization established in 1991 by a passionate group of parents of children with special needs. These parents recognized that together they could provide support through sharing essential information and helping to find the resources they needed for their loved ones. This peer model continues to be at the heart of our work and has lead RIPIN’s network to expand statewide. Today we have over 100 employees, most of whom have personal experience caring for a loved one with special health care or educational needs.

The RIPIN Call Center offers free support to any Rhode Islander who needs help accessing healthcare, health insurance, or special education for children with disabilities.

RIPIN helps any Rhode Islander, from infants to seniors.
We can help you navigate:

Senior Citizens’ Law Office was founded in 1983 with the goal of providing senior citizens in Albuquerque, New Mexico with free legal assistance. We currently serve seniors age 60 and older in Bernalillo, Sandoval, Torrance, and Valencia counties, New Mexico, with a wide range of free legal services. We also offer estate planning services for a reduced fee, including wills, probates, and transfer on death deeds (TODDs). SCLO has Spanish-speaking staff, and is committed to offering services in Spanish and other languages. We use translation services as needed in order to effectively serve our clients.

We offer the following free legal services to seniors age 60 and over: 

• Healthcare: Rectification of improper billing by healthcare providers, health insurance disputes, denials of coverage, and advice about Medicaid and Medicare programs; Veterans Affairs; health care powers of attorney.  Learn more about our Health Care Rights project.

• Public benefits: Help with food stamps, Medicaid, veteran’s benefits, Social Security and SSI.
• Housing: Foreclosure defense and prevention, eviction defense and prevention, landlord-tenant problems, public and section 8 housing assistance, and reverse equity mortgage.
• Advance directives:  Health Care and Financial powers of attorney, cremation authorizations. Learn more about the advance directives we provide for free to seniors.
• Financial Well Being:  Financial exploitation prevention and defense, consumer matters, financial powers of attorney, debt collection, identity theft and prevention, social security, supplemental security income (SSI), veterans affairs, civil service, and railroad retirement benefits, and other public benefits programs.
• Guardianships:  guardian ad litem appointments for allegedly incapacitated seniors.
• Consumer Support: We address issues of debt collection, unfair trade practices, lemon law, billing disputes, predatory lending.
• Long Term Care:  protecting the individual rights of nursing home and assisted living residents.

Eligibility Requirements 

To receive free services from SCLO, you must meet all of the following requirements:

• 60 years of age and over
• Live in Bernalillo, Sandoval, Torrance, or Valencia counties
• The services you need fall within the legal counsel we provide
• Your case may demonstrate the vulnerability of all seniors to core issues of concern
• Your income level is within the limits stipulated by our donors

SPAN provides individuals assistance, training, and support for families, youth, and professionals on early childhood, education, health and mental health, human services, disability, transition to adult life, and family-professional partnerships, focusing on families with children and youth at greatest risk due to disability, specialist healthcare needs, race ethnicity, immigrant status, language, socio-economic status, geographic location, etc. SPAN also provides community doula support and advocacy for pregnant African-American and black women to reduce disparities in Black maternal and infant health.

The Tennessee Disability Coalition is an alliance of organizations and individuals joined to promote the full and equal participation of people with disabilities in all aspects of life.

To support this mission, the Coalition offers the following programs:

• Public Policy Program
• Americans with Disabilities Act (ADA) Program
• Family Voices of Tennessee
• WorkAbleTN
• Brain Links
• Discretionary Small Grants Program

The Texas State Independent Living Council (SILC) is a nonprofit organization with the mission to assist Texans with disabilities to live as independently as they choose. There is one SILC in each state. Texas SILC is led by a majority of people with disabilities and consists of Governor-appointment members.

Founded in 1981, Texas Legal Services Center is a nonprofit organization that provides legal advice, advocacy, representation, and education to underserved people across the state. With more than a dozen practice areas, our work touches almost every aspect of civil law that impacts low-income Texans.

Texas Rare Alliance is dedicated to improving access and health outcomes for rare disease patients through education and advocacy. We work to unite the stakeholders in the Texas rare disease community. Together we can make Texas a State of Access for rare disease patients.

Founded in 1970 to represent Texas farmworkers, TRLA has grown into the nation’s second largest legal aid provider and the largest in Texas. TRLA provides free civil legal services to residents in 68 Southwest Texas counties, and represents migrant and seasonal farm workers throughout the state and in six other southern states. TRLA also operates public defender programs that serve at least 10 Texas counties, representing low-income and indigent people accused of felonies, misdemeanors, and juvenile crimes. TRLA serves about 23,000 clients each year. However, more than 2.6 million residents of Southwest Texas are considered eligible for TRLA services, a ratio of almost 21,000 potential clients per legal aid lawyer. As a result, thousands of low-income Texans still lack access to civil legal representation.

The Arc of Texas envisions a world where Texans with intellectual and developmental disabilities (IDD) are included in their communities, where quality supports and services are available to meet their needs and choices. We prioritize policies and legislation that advance the equality and civil rights of Texans with IDD, specifically related to inclusive education, competitive integrated employment, quality community services and supports, and access to civil rights and justice. Along with self-advocates and their families, we inform state legislators about issues affecting Texans with IDD. Because of this work, our members have been instrumental in the creation of virtually every program, service, right, and benefit now available to Texans with IDD.

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

The Arc Tennessee has a team of experienced advocates that work directly with individuals to solve problems, connect them to resources, develop advocacy skills, or assist with a wide array of specific needs. Individual advocacy services are designed to assist individuals with intellectual and developmental disabilities and their families in understanding their rights and identifying opportunities to pursue and achieve their dreams. Our overall goal is to empower individuals to effectively advocate for themselves. Individual advocacy services are free to individuals and families. The Arc Tennessee can provide information when legal issues are involved, but The Arc Tennessee does not provide legal advocacy services when legal issues are involved. We also provide educational support, mentor programs, and transition from childhood to adult programs.

The Arc Wisconsin advocates for and with people with intellectual and developmental disabilities (I/DD) and their families to improve their quality of life; expand opportunities; and to increase their full inclusion in all aspects of community throughout their lifetimes. The Arc Wisconsin strives to promote awareness and respect for the value, contributions and rights of all people with I/DD. Since 1960, The Arc Wisconsin has served individuals and their families through our locally affiliated chapters across the state. The Arc Wisconsin works to develop programs and advocate for public policy giving people with I/DD the opportunity to learn, live, and work inclusively in their communities.

Supports and services offered by our chapters include:

• Information and referral services;
• Individual advocacy to address education, employment, health care and other concerns;
• Self-advocacy initiatives;
• Residential support;
• Family support;
• Employment programs; and
• Leisure and recreational programs

The Arc Wisconsin is a chapter of the national organization, the Arc. The goal of this organization is to provide resources and advocate for individuals with intellectual and developmental disabilities.

Resources for children and adults are listed here: https://arcwi.org/arc-resources/

The mission of The Coordinating Center is to partner with people of all ages and abilities and those who support them in the community to achieve their aspirations for independence, health, and meaningful community life.

Programs and Services

Maryland’s Autism Waiver allows eligible children and young adults with Autism Spectrum Disorder to receive waiver and Medicaid services to support them in their homes and communities. The Coordinating Center is contracted by local school systems to provide case management for their students on the Autism Waiver in Dorchester, Harford, Howard and Worcester counties.

DDA Services: The Coordinating Center partners with the Maryland Developmental Disabilities Administration (DDA) to provide Coordination of Community Services (CCS) for people with intellectual and developmental disabilities and their families. Our expert Coordinators can help you plan for the future, and meet your personal goals.

The Family Resource Fund provides clients of The Coordinating Center with financial assistance to purchase items or services that are not covered by Medicaid or Medicare. The fund accepts the following types of requests:

• Critical/Safety Need- fund allocation limited to $500 or less for current fiscal year
• Housing stability (rent, security, deposit or utilities)- fund allocation limited to $500 or less for one-time only
• Quality of Life- fund allocation limited to $300 or less for current fiscal year

Home and Community-Based Services: The Coordinating Center provides supports planning services to older adults and individuals with disabilities who live and want to remain in the community or are living in a Maryland nursing facility and want to move to a home.

The Coordinating Center works in a cooperative arrangement with Montgomery County, Maryland’s Department of Housing and Human Services (DHHS) to provide service coordination and supportive services to formerly homeless individuals through the Housing Initiative Program (HIP).

The Coordinating Center assists with the intake and eligibility process for the Model Waiver. Currently there is a prioritized waiting list and applications are processed in the order they are received. Model Waiver is a Maryland Medicaid program, which allows medically fragile individuals, before the age of 22 years to live at home. Without this benefit, these individuals would be hospitalized, as their medical needs require hospital or nursing facility level of care. Under the Waiver, the parents’ income and assets are waived during the financial eligibility process even though the child continues to live in the community with their parent(s).

The Rare and Expensive Case Management (REM) Program is Maryland’s, case managed, fee for service alternative to HealthChoice Managed Care Organization (MCO) participation. The REM Program is for individuals receiving Maryland Medical Assistance with a qualifying diagnosis that is rare in occurrence and expensive to treat. The purpose of the program is to provide community-based care coordination services for people with specialized health care needs, providing access to high quality, medically appropriate health care services in a cost effective setting outside of a managed care organization.

The mission of The Coordinating Center is to partner with people of all ages and abilities and those who support them in the community to achieve their aspirations for independence, health, and meaningful community life.

Programs and Services

Maryland’s Autism Waiver allows eligible children and young adults with Autism Spectrum Disorder to receive waiver and Medicaid services to support them in their homes and communities. The Coordinating Center is contracted by local school systems to provide case management for their students on the Autism Waiver in Dorchester, Harford, Howard and Worcester counties.

DDA Services: The Coordinating Center partners with the Maryland Developmental Disabilities Administration (DDA) to provide Coordination of Community Services (CCS) for people with intellectual and developmental disabilities and their families. Our expert Coordinators can help you plan for the future, and meet your personal goals.

The Family Resource Fund provides clients of The Coordinating Center with financial assistance to purchase items or services that are not covered by Medicaid or Medicare. The fund accepts the following types of requests:

• Critical/Safety Need- fund allocation limited to $500 or less for current fiscal year
• Housing stability (rent, security, deposit or utilities)- fund allocation limited to $500 or less for one-time only
• Quality of Life- fund allocation limited to $300 or less for current fiscal year

Home and Community-Based Services: The Coordinating Center provides supports planning services to older adults and individuals with disabilities who live and want to remain in the community or are living in a Maryland nursing facility and want to move to a home.

The Coordinating Center works in a cooperative arrangement with Montgomery County, Maryland’s Department of Housing and Human Services (DHHS) to provide service coordination and supportive services to formerly homeless individuals through the Housing Initiative Program (HIP).

The Coordinating Center assists with the intake and eligibility process for the Model Waiver. Currently there is a prioritized waiting list and applications are processed in the order they are received. Model Waiver is a Maryland Medicaid program, which allows medically fragile individuals, before the age of 22 years to live at home. Without this benefit, these individuals would be hospitalized, as their medical needs require hospital or nursing facility level of care. Under the Waiver, the parents’ income and assets are waived during the financial eligibility process even though the child continues to live in the community with their parent(s).

The Rare and Expensive Case Management (REM) Program is Maryland’s, case managed, fee for service alternative to HealthChoice Managed Care Organization (MCO) participation. The REM Program is for individuals receiving Maryland Medical Assistance with a qualifying diagnosis that is rare in occurrence and expensive to treat. The purpose of the program is to provide community-based care coordination services for people with specialized health care needs, providing access to high quality, medically appropriate health care services in a cost effective setting outside of a managed care organization.

Since 1952, the Council has empowered Kentuckians with IDD (Intellectual and Developmental Disabilities) and their families to live their best life- full of love, support, and resources.

Education 

We empower people with IDD and their families by connecting them to all the resources they have at their disposal. We offer webinars, presentation series and training opportunities to help our families navigate life with knowledge and ease.

Advocacy 

Part of life with IDD means we must advocate for equal rights and access to care. At our core, we are an advocacy organization- we believe people with IDD should be seen, heard, and given equal opportunities as the neurotypical population.

Support 

Knowing that others have walked the same path makes all the difference. Here at the Council, that’s what we do- we share our experiences, resources, and share our support. We offer one-on-one counseling or support groups that meet regularly.

The Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients.

The Equipment/Supply Exchange Program 

• The goal is to connect families in need of enteral formula, tubing, and other supplies with families who have items to donate. There is no guarantee that any one product will be available at a specific time.
• Our focus is on supplies and equipment related to home tube feeding and IV nutrition. Typical items include: enteral formula, feeding bags, tubing, IV poles, syringes, rand related supplies.
• The person requesting supplies must pay for shipping prior to any products being shipped from the donor; but this should be the only cost associated with the products.

Pink Rocki Advocacy Foundation (PRAF) is a 501(c)(3) non-profit organization whose mission to to equip emerging adults as they prepare to leave home for the first time with the necessary knowledge, tools, and resources needed to prioritize and balance self-care.

The Richard West Assistive Technology Advocacy Center (ATAC) of Disability Rights New Jersey serves as New Jersey’s federally funded assistive technology project through a sub-contract with New Jersey’s Department of Labor and Workforce Development. Its purpose is to assist individuals across New Jersey in overcoming barriers in the system and making assistive technology more accessible to individuals with disabilities throughout the state of New Jersey.

Services

• Advocacy and legal representation
• Assistive technology loan program
• Device demonstrations
• Device short-term loans
• Device re-utilization
• Training and technical assistance
• Conferences/webinars

Vermont Legal Aid is a non-profit 501(c)(3) law firm established in 1968. We provide civil legal services for Vermonters, including those living in poverty, with a disability, or over age 60. We also serve anyone who is discriminated against in housing decisions. We also help all who face challenges related to health care insurance or services. Our services are free. We haves offices in Burlington, Montpelier, Rutland, Springfield, and St. Johnsbury.

Our Disability Law Project (DLP) helps people with civil legal problems related to their disability. We give legal advice, we support self-advocacy, and we represent clients and their families in courts, hearings and other settings.

We help with legal issues like:

• abuse, neglect and exploitation of people with disabilities
• access to assistive technology
• access to health care and specialized (“waiver”) services like Developmental Services, Choices for Care or the TBI program
• access to transportation
• children’s Supplemental Security Income (SSI) terminations based on disability
• disability discrimination in employment, housing and public accommodations
• education issues like special education eligibility, suspensions, restraints and seclusions, and
• guardianships and alternatives like Supported Decision Making.

Volunteer Legal Services of Central Texas (VLS) is a 501 (c)(3) non-profit organization which exists to help low-income clients access the civil justice system by providing volunteer attorneys who donate free legal advice and representation, and by supporting and training those attorneys.

Our clients include hard-working minimum wage earners with dependents and those on fixed incomes—people who could never afford legal assistance, even when their need is desperate. Its vision is that poverty not be a barrier to justice.

Our mission is to improve the quality of life of all individuals living in the state of West Virginia affected by rare disease. Our vision is to lead in efforts to support care for individuals living with rare disease through collaboration, education, support, and advocacy.

The duties of the council are as follows:

(1) Coordinate statewide efforts for the study of the incidence of rare disease within the state;

(2) Act as the advisory board to the secretary and the West Virginia Legislature on research, treatment, and education relating to rare diseases;

(3) Research and identify priorities relating to the quality of, and access to, treatment and services provided to persons with rare diseases in the state;

(4) Develop, in conjunction and cooperation with the state’s medical schools, policy recommendations relating to the quality of, and access to, treatment and services provided to persons with rare diseases in the state;

(5) Advise, consult, and cooperate with other offices of the department, other agencies of state government, and patient-based organizations in the development of information and programs of benefit to the public and the health care community relating to the diagnosis, treatment, and awareness of rare diseases;

(6) Identify best practices for rare disease care as implemented in other states and at the national level that will improve rare disease care in the state;

(7) Develop recommendations for effective strategies to raise public awareness of rare diseases in the state;

(8) Develop recommendations for best practices for ensuring that health care providers are sufficiently informed of the most effective strategies for recognizing and treating rare disease; and

(9) Report to the Governor, secretary, and West Virginia Legislature not later than January 1, 2021, and annually thereafter on the activities of the advisory council and its findings and recommendations regarding rare disease research and care in West Virginia, including any recommendations for statutory changes and amendments to the structure, organization, and powers and duties of the advisory council. The advisory council shall terminate on January 1, 2023.

Mission Statement:

The West Virginia Chapter National Hemophilia Foundation (WVNHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

Financial Assistance Program Eligibility:

• Be a constituent that resides in the territorial jurisdiction of West Virginia Chapter of NHF, or receives treatment for an inherited bleeding disorder at any of the area Hemophilia Treatment Centers (HTCs).
• All applicants must be 18 years of age or older. Applicants can be a parent or caregiver of a minor child who lives in your home and who has a diagnosis of a bleeding disorder OR be an individual with a diagnosed bleeding disorder.
• Complete all sections of the application thoroughly and accurately. If a question does not apply, it should be marked not applicable (n/a). Failure to provide complete and truthful information may result in denial of your request.
• West Virginia Chapter of NHF must determine that the applicant qualifies for financial assistance pursuant to its Financial Assistance Policy in order to review the request.
• West Virginia Chapter of NHF recommends that applicants request assistance from at least two (2) other agencies before applying to the West Virginia Chapter of NHF for funding.
• If possible, coordinate request with the social worker, nurse coordinator, or medical provider at a hemophilia treatment center (HTC) or other healthcare provider treating inherited bleeding disorders.
• Applicant must sign the application to indicate an intended use agreement stating that the financial assistance received from the West Virginia Chapter of NHF will be used for the purpose indicated on approved financial assistance application.

Example Eligible Expenses:

• Expenses incurred in the care, treatment, or prevention of a bleeding disorder
• Transportation services to medical appointments and HTCs
• Medical supplies not covered by insurance
• Basic living expense emergencies (rent, mortgage, utilities, food, etc.)
• Unexpected home or car repairs
• Medic Alert Bracelets
• Dental expenses
• Health insurance premiums
• Funeral expenses

*Assistance is limited to a maximum of $500 per calendar year, with a minimum of 3 months between requests, per household, which also includes claimed dependents. Under unique circumstances, request(s) above the $500 limit must receive special approval by the West Virginia Chapter of NHF, the Advisory Board, and/or Financial Assistance Committee.

Located in every county and tribe in the state, Wisconsin’s Family Caregiver Support Programs provide information and assistance to help people better care for their loved ones – and themselves. Whether arranging for services (e.g., respite care, transportation, etc.) or helping families understand their options for care, Family Caregiver Support Programs give caregivers access to the information and services that can help them in the often rewarding – sometimes challenging – role of caregiver.

Wisconsin’s Family Caregiver Support Programs provide help to family members and friends who care for:

* a person age 60 and over; or
* a person with Alzheimer’s disease or a related disorder regardless of age.

Programs also assist grandparents or relative caregivers 55 years of age and older who:

* care for children under age 19, or
* care for a relative with a disability who is 19 to 59 years of age

Find assistance closest to you here: https://wisconsincaregiver.org/local-resources

WECAN (Women’s Empowerment through Cape Area Networking) was founded in 2001 to empower Cape Cod women by providing unique services that inspire hope and bring increased stability, self-sufficiency, and opportunity to their lives. WE CAN serves more than 2,400 women each year across Cape Cod with free and confidential legal services, employment and business support, financial empowerment, mentoring, and personal development programs. More than 70% of our participants access more than one service at WE CAN.

Youth Organizing! Disabled & Proud is a program of the California Foundation for Independent Living Centers (CFILC). YO! Disabled & Proud connects, organizes, and educates youth with disabilities.

Youth Organizing (YO!) develops community organizing activities to build a power base among youth with disabilities so that we can effectively work for change. We engage youth to learn about our history, the disability rights movement, disability pride, organizing, and advocacy. Youth with disabilities build community with each other, develop a sense of leadership, a positive disability identity, and organize and mobilize each other on issues that affect our lives.

We provide opportunities, resources, and information for young adults with disabilities. Disabled youth are able to volunteer with local independent living centers, work on advocacy issues and campaigns that are important to them, and find mentor within the disability community. YO! works with teens and young adults with disabilities ages 16 to 28.

Become a member of the YO Disabled & Proud Network: http://www.yodisabledproud.org/join-yo/