Research

National Association of Social Workers The NASW website is a prime site for staying on top of social work trends, research and news. By putting "research" in the search area at the top right of the site, social workers can also gain access to fellowships, studies and monetary awards that support social work research initiatives. This organization is one of the most active social work groups in the United States. Membership provides a variety of benefits that support research and practice.
Society for Social Work and Research This national society seeks to involve social workers, social work faculty, and social work students in research, as well as to promote the betterment of lives through research. This link provides links for a research journal, other resources, and a venue for connecting to other research-oriented social workers.

 

Summer Camp

American Camp Association Become a member of the American Camp Association and receive a wealth of knowledge of the high Standards in place in camp planning and management of camp for children with chronic conditions. For the bleeding disorders social worker who is curious about being a Camp Director at a Camp for children with bleeding disorders or has a strong desire to be involved in Camp Management this is an excellent resource and professionally serviced by Camp Professionals, who highlight camp leaders such as Bob Ditter, a senior level clinical social worker. Highly recommend this web link for the camp enthusiast!

 

Patient Advocacy and Ethics

Americans With Disabilities Act This web link is an educational tool for the Social Worker providing clinical care for patients with disabilities. The link offers a wide variety of services offered to assist patients with disabilities and improve their quality of life. For the bleeding disorder social worker this web link is user friendly to research resources for our patients, advocate for them and empower them to live safely for as long as they can live independently.
Joint Commission Joint Commission accreditation and certification is recognized nationwide as a symbol of quality that reflects an organization’s commitment to meeting certain performance standards in a wide variety of healthcare settings. For the bleeding disorder Social Worker who provides direct patient care, it is important to stay informed and up to date of documentation standards in the health industry. Furthermore, you can utilize this skill throughout your professional experience.
NHF Ethics Working Group The Ethics Working Group is a support system to the bleeding disorders community in listening and acknowledging concerns. The committee does not wish to become involved in the details of each issue, but instead, to identify trends, patterns and raise awareness. For the bleeding disorders social worker, there is the opportunity to shadow the current Social Work Representative on the Ethics Working Group, and collaborate with the Ethics Working Group on how to provide education and raise awareness in this community.
Practice and Professional Development An advantage to being a National Association of Social Workers member are the notifications to upcoming continuing education courses offered to Social Workers across the nation. These CEU’s can be selected by Social Workers based on their area of practice and interest. Available at your convenience 24 hours a day, the Center offers NASW courses in a variety of formats—webinars, webcasts, podcasts, presentations, etc. Courses will continue to be added to the Center’s initial offerings to cover numerous practice areas. NASW’s new Center is an excellent continuing education resource. All courses offered are NASW accredited and members receive a discounted rate. For the bleeding disorder social worker, there is the option or reaching out to an additional national Social Work support system available to assist us. Professional social workers work at a management level at NASW and are committed to addressing a wide variety of situations we incur in our profession.
Social Work Code of Ethics (NASW) Social Work Code of Ethics is approved by the 1996 National Association of Social Workers (NASW) Assembly and revised by the NASW 2008 Social Workers Assembly. The NASW Code of Ethics is a guide by which Social Workers base their professional ethical standards, principles and values. For the bleeding disorder social worker, ethical situations are very prevalent. The NASW Code of Ethics serves as a navigational tool in the everyday professional conduct of social workers who work with issues of professional boundary relationships with patients, parents of patients who work at the Chapter level or who sit on boards as well as providing education to the community at large about the high standards Social Workers uphold.

 

Insurance (Public and Private)

Affordable Care Act, Affordable Care Act - Individuals and Families This website is the main web page for the federal government’s Health Insurance Market Place. Clinic on this website to direct consumers to either their state-based insurance market place or federal –based market place. Bleeding Disorder social workers will benefit from showing consumers how to access the new insurance marketplace and how it will direct them to the appropriate insurance market place depending on the state in which they reside.
Social Security Administration, Social Security Administration - Compassionate Allowances This is the Social Security Administration’s main webpage for consumers. This webpage will direct the consumer to information regarding which diagnosis qualify for compassionate allowances and defines "disability status". These websites will assist social workers to appropriately refer patients to Social Security Disability, answer questions related to disability status, application process, appeals, etc.

 

Cultural Diversity and World Connections

HemaWare, The Bleeding Disorders Magazine HemaWare is an online bleeding disorder magazine. Current and past issues are available online. Articles include Life Stages, Research and Treatment, Health and Wellness, Parenting and Family, Community and more. Culture Clash: This article helps illustrate to social workers in the bleeding disorder field to try to understand how cultures differ in their comfort with Hemophilia Treatment, and the importance of Language Interpreters. This article also offers resources to the social worker to assist in cultural competency.
National Center for Cultural Competence The National Center for Cultural Competence(NCCC) is a cooperative agreement funded as part of the Family-Professional Partnerships Program administered by the Integrated Services Branch, Division of Services for Children with Special Health Needs, which is part of the Maternal and Child Health Bureau of HRSA. This website directs you to information that can be provided by the (NCCC) for bleeding disorder social workers to access for advocacy needs.

 

Financial Assistance and Grants

Colburn Keenan Foundation This foundation provides assistance and support to individuals and families impacted by chronic bleeding disorders, helping them to meet their urgent medical, health insurance, basic survival, and quality of life needs. Visit their website for more information on types of grants and to download a grant application.
Helping Hands of Hemophilia Federation Helping Hands assists people who are going through temporary financial crisis for reasons related to their bleeding disorder. This is a source of temporary help and applicants are eligible for assistance once a year. Historically, the majority of applications request assistance with rent, mortgage, utility bills and car payments. Social Workers can visit the HFA website for more information and to initiate a referral.
Hope for Hemophilia Hope for Hemophilia is a 501(c)(3) non-profit organization providing financial assistance to people with hemophilia who are experiencing a financial crisis related to their bleeding disorder care. They help with everything from medical costs and insurance expenses to everyday basic needs. Application for assistance is available on their website.
Needy Meds Patient Assistance Network NeedyMeds is a national non-profit organization that maintains a website of free information regarding a wide range of programs that can help patients who cannot afford their medications. Extensive information is available, summarizing thousands of patient assistance programs, free & low cost clinics and drug discount coupons. Hemophilia-specific programs are thoroughly summarized, both nationally and by State.
PSI/Patient Services Incorporated PSI is a national non-profit organization whose mission is to provide assistance with health insurance premiums and co-pays for patients with expensive chronic illnesses, including hemophilia and von Willebrand Disease. In addition to financial assistance, PSI also provides counseling to patients and families regarding insurance issues and resources. Visit their website for more information on programs and to initiate an online application.

 

General Health and Support

Centers for Disease Control This section of the CDC’s website is focused on sexual health topics, including healthy relationships, disease prevention/management, and pregnancy. This website offers general sexual health information that will be useful for any social worker despite having specifics to the bleeding disorders population.
Kids Health Kids Health is a website dedicated to educating parents, kids, and teens on various pediatric health and development topics. The website has different sections geared for parents, kids, and teens. There are articles on a myriad of topics from general health conditions to living a healthy lifestyle. This website has an article on hemophilia for parents and teens, but this site is also helpful for most topics related to children’s health.
Purple Crying The Period of PURPLE Crying is a new way to help parents understand this time in their baby's life, which is a normal part of every infant's development. There are other common characteristics of this phase, or period, which are better described by the acronym PURPLE. All babies go through this period. It is during this time that some babies can cry a lot and some far less, but they all go through it. The website provides education about PURPLE as well as tips for healthy sleeping and soothing of the infant. The goal of this education is to prevent incidents of abusive head trauma, formerly known as shaken baby syndrome. While this is not specific to the bleeding disorders community it is a good reference for parents of newborns.

 

Healthy Relationships

Love is Respect Focus is on teen relationships and covers topics on how to maintain a healthy relationship to dating violence prevention. They have PDF versions of the topics so make excellent handouts for adolescents.
NHF Steps for Living Discussion on dating relationships and sex when you are a person with a bleeding disorder. This is a good reference to direct patients to and/or for the social worker to review to understand the experiences of our patients and provide education.
There For You This website provides guidance on how to tell your significant other about hemophilia. A good reference site to give to people with bleeding disorders if they are uncertain about how to share this with others.

 

Aging

AARP This is a gigantic website with endless links and resources, basically, for people over 50. It covers just about any topic imaginable and is, and will continue to be, a valuable resource for people with bleeding disorders as they continue to live longer with the benefit of improved treatment.
Aging Resource Clearinghouse This is a national database of information about aging which provides resource information on topics such as long-term care, legal assistance, in-home services, elder abuse, and support/caregiver issues. As more of our patients age, these resources will become increasingly important.

 

Advanced Directives

Five Wishes Five Wishes is a national advance directive created by the non-profit organization, "Aging with Dignity". It has been described as the "living will with a heart and soul." Briefly, the five wishes are: -The Person I Want to Make Care Decisions for Me When I Can’t -The Kind of Medical Treatment I Want or Don’t Want -How Comfortable I Want to Be -How I Want People to Treat Me -What I Want My Loved One’s to Know
   

 

Youth Transitions

Got Transition Got transition is a national resource for health care information focusing on a young adult’s transition from pediatric to adult health care for all youth, including those with special needs. Resources are available to help patients, families and caregivers understand the many important issues they face prior to and during transition. A series of videos are available that cover main areas such as: legal, financial, residential, vocational and medical self-management.

 

Legal Resources

American Bar Association American Bar Association is a voluntary bar association of lawyers and law students which is not specific to any jurisdiction in the United States. The ABA is committed to providing the public with information about the law, the courts and legal education. Resources include: practical guides to legal issues, overview of courts, legal procedure and the steps in a trial. Laws issues for consumers: real estate, auto/vehicle, finance, family law, workplace law, health care, personal injury, and technology law. Other resources include estate planning (overview of estate planning issues, wills, trusts, probate, etc.) tax tips (helpful information for consumers seeking a better understanding of their rights and responsibilities as taxpayers.) and FindLegalHelp.org which provides a state-by-state listing of programs to help you find a lawyer, including free legal help. In addition, you can research legal topics with links to state-specific legal resources.
Immigration Advocates The Immigration Advocates Network (IAN) is a collaborative effort of leading immigrants' rights organizations designed to increase access to justice for low-income immigrants and strengthen the capacity of organizations serving them. IAN promotes more effective and efficient communication, collaboration, and services among immigration advocates and organizations by providing free, easily accessible and comprehensive online resources and tools. Resources included are: library, podcasts, calendar of trainings, videos, webinar, recent cases, etc., immigration legal services (providers by state, county, or detention facility). Only nonprofit organizations that provide free or low-cost immigration legal services are included in this directory.

 

Prescriptions

Finger Tip Formulary This website offers information about insurance coverage by medication, insurance, and state. It provides what tier medication is on, restrictions and gives the medication website. Social workers can help patients get the information needed to talk with their health care providers about medication choices based on their insurance coverage.
Good Rx The website provides a way to look up a medication by location to see what the cost is by store/pharmacy. It provides the out of pocket cost of the medications in all the pharmacies in a selected area. This allows social workers to help patients/families with budgeting and locating their medications especially if paying out of pocket.
Needy Meds NeedyMeds is a national non-profit organization that maintains a website of free information regarding a wide range of programs that can help patients who cannot afford their medications. Extensive information is available, summarizing thousands of patient assistance programs, free & low cost clinics and drug discount coupons. Hemophilia-specific programs are thoroughly summarized, both nationally and by State.

 

Bullying

Bullying/American Psychological Association This is a more clinically-focused website offering information on bullying geared to adults/parents/educators.
Dealing with Bullying/Kids Health This is an interactive website offering many different topics on bullying geared to parents, kids, teens, and educators.
Stop Bullying This website offers social workers access to a description of bullying and the different types, defines who is at risk, guidance on how to prevent and respond as well as other resources.

 

Mental Health

Medical News Today A great source for health news since 2003. Over 241,700 articles spanning hundreds of medical topics. Social workers can benefit from the wide range of literature available on medical topics that affect their patients.
National Association for the Mentally Ill This is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. It’s a great resource for social workers working with people with mental illness. This site details the different mental health diagnoses, types of treatment, advocacy, as well as new promising treatments.
Substance Abuse and Mental Health Services Administration A great resource for social workers who work with patients struggling with substance abuse and mental health issues, which so often go hand in hand. It is a wealth of information regarding substance abuse issues, conditions and disorders, substances, treatment, prevention and recovery, as well as professional and research topics. SAMHSA has a large selection of manuals and clinical reports available to the public and to aid professionals working with these challenging issues.

 

Dental Health

Affordable Dentures The Affordable Dentures network has served more than six million patients since the first office opened nearly 40 years ago. This is a great site for social workers helping patients with finding affordable dentures, partials, tooth extractions and dental implants. The Affordable Dentures Network’s website also states they make their best effort to accommodate people with special needs.
American Dental Association The American Dental Association is America’s leading advocate for oral health – supporting dentists and educating the public on the importance of oral health and its link to overall good health. Social workers can use this site to find local dental programs, learn about research and advocacy regarding dental issues and download the ADA series of papers examining the challenges and solutions to bringing good oral health to Americans.

 

Education, IEP and Scholarship Resources

Education.gov This website provides information about loans, grants, laws, policies regarding education and student loan forgiveness. Paying for college stresses most teens as they transition to adulthood, and this resource and help guide them through this. This can be used as a resource in addition to bleeding disorder scholarships.
Kids Health This website breaks down special education laws into laymen’s terms, and explains when a patient needs an IEP or a 504. It has parenting tips, pages for kids and teens as well about safety and health. This is helpful if the social worker does not have a teacher or educational consultant on your team, and the social worker is the one looked to for guidance.
National Association of Parents with Kids in Special Education This website provides information on special education laws as well as information on transition which is beneficial to social worker to help guide the family.
Understanding Special Education, A Parents’ Guide This website provides an overview of IDEA as well as information on IEPs and 504 plans. There is also information about special education services in the private school setting and homeschooling. Additional resources on children with autism, ADHD, and other various learning disabilities are given. This website would be a good reference for parents to educate themselves about the education laws and services.

 

Hospice and Care at Home

Meals on Wheels Association of America Meals on Wheels Association of America (MOWAA) provides information on the oldest, community-based senior meal program in the country. The site assists with local referrals to any of the 5,000 national senior meal programs. The MOW program provides daily meals to seniors or home-bound disabled residents free or at very low cost to the consumer.
Medical Home Information The National Center on Medical Home Implementation (NCMHI) is a resource for health professionals, families, and anyone interested in creating a medical home for all children and youth. A medical home is not a building or a facility, but an approach to providing comprehensive primary care that facilitates partnership between patients, physicians, and families. This site provides education and information on holistic, family-centered and community-based care models.
National Association for Home Care and Hospice NAHC (National Association for Home Care and Hospice) represents the interests of chronically ill, disabled and dying consumers of all ages as well as the caregivers who provide them with in-home health and hospice care. NAHC not only works on legislation, advocacy related to home health care, but also provides practical services such as state-specific home health and hospice locators, legal services and patient rights resources.
National Hospice and Palliative Care Organization National Hospice and Palliative Care Organization (NHPCO) provides community education on end of life and palliative care issues. This website provides information and resources for advance care planning, hospice care facilities and educational seminars for families and providers.
Take Them a Meal Take Them A Meal is an excellent on-line tool to assist friends and family to coordinate meals for an individual in need. The site provides a scheduling system in which family may sign up to provide and deliver specific meals throughout the day or week. The site recommends home-cooked recipes as well as pre-cooked meals which can be ordered on the site and sent anywhere in the country.