Resources

Tip Sheets and Presentations by Lee Rachel Jurman:

To Work or Not to Work - MitoAction.org Podcast
http://itunes.apple.com/podcast/mitoaction-org-podcast/id290467730
Podcast given on August 7, 2009 for people living with mitochondrial disease. This presentation is relevant to people working with chronic illnesses, trying to assess how their disabilities and ability to work affect each other, and looking at their options.

Individuals and Organizations:

The following people and organizations are but a few of the many that I refer to on a regular basis. They are unique in their areas of expertise.

Barbara Bissonnette, Forward Motion Coaching
http://www.forwardmotion.info/
Barbara provides career and job readiness coaching for individuals with Asperger’s Syndrome, Nonverbal Learning Disabilities and other social communication challenges. She has a monthly newsletter, the Asperger’s and NLD Career Letter, a number of publications, including her book, The Asperger's Syndrome Workplace Survival Guide: A Neurotypical's Secrets for Success.

Jacqueline Dobson, Solutions for Accessibility
SolutionsForAccess.com
Jackie assists homeowners to make their homes accessible. She provides in-depth consultations, planning, and a design/build service to help people make home modifications, design new homes, and access specialty and hard to find products.

Rose Gschwendtner, Efficient Solutions
W: 617-332-6632
C: 617-365-3030
Email: efficientsol@aol.com
Rose is an organizer who specializes in managing operating accounts for individuals who can’t manage their money independently. She assists with budgeting, pays bills, and provides allowances as needed.

Rosalind Joffe, CI Coach
http://www.cicoach.com/index.html
Rosalind is a career coach for people living and working with chronic illnesses. She has a weekly blog called “Working with Chronic Illness" and a number of publications.

Clare McGorrian, Consumer Health Law Counsel
http://www.cdmhealthcounsel.com
Clare focuses her practice on providing legal services to health care consumers - primarily in health insurance coverage and eligibility disputes. She helps small employers meet legal requirements for their employee health plans and benefits.

AANE, the Asperger’s Association of New England
http://www.aane.org/
The Asperger’s Association of New England provides information, services and supports to individuals, families and professionals throughout New England.

MitoAction
http://www.mitoaction.org/
MitoAction is a national organization that provides information, support and advocacy for individuals and families living with mitochondrial disease.

Rewarding Work
http://www.rewardingwork.org/
Rewarding Work is a website that brings together personal care attendants who are looking for work with elders and adults with disabilities who are looking for PCA’s. Currently, Rewarding Work serves Connecticut, Massachusetts, New Jersey, Rhode Island and Vermont.

Caregiving:

CaringBridge
http://www.caringbridge.org/
This website lets people create free, personal and private websites that connect people experiencing significant health challenges to family and friends. The sites allow people to provide updates and receive messages/support from others.

Lotsa Helping Hands
http://www.lotsahelpinghands.com/
This website offers users a place to develop a free, private, web-based community to organize friends, family, and colleagues during times of need. Coordinate tasks and manage volunteers with a group calendar.

Cash and Food Benefits:

Benefits CheckUp, National Council on Aging, https://www.benefitscheckup.org/moreprograms.cfm?partner_id=0
Calculator that identifies public programs for people ages 55 and over that may pay for some of the costs of prescription drugs, health care, utilities, and other essential items or services.

Social Security Administration
http://www.socialsecurity.gov
SSA pays Social Security retirement, disability, and survivors’ benefits to workers and their families and administers the SSI program. The site has extensive information, publications and forms for all programs. Applications for disability and retirement benefits can be submitted online.

Supplemental Nutrition Assistance Program (SNAP)
http://www.fns.usda.gov/snap/
SNAP is the federal entitlement program (formerly the Food Stamp Program) that provides supplemental food and nutrition assistance to low income people. SNAP recipients use EBT cards, similar to debit cards, to purchase food in authorized retail stores.

Healthcare & Health Insurance:

A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan, Kaiser Family Foundation, 2005,
http://www.kff.org/consumerguide/
How to work with your managed health care, understand coverage and appeals process.

A Family Caregivers Guide to Hospital Discharge Planning, Hunt, Gail Gibson, and Levine, Carol, National Alliance for Caregiving, United Hospital Fund of NY and MetLife Foundation, 2002,
http://www.caregiving.org/pdf/resources/familydischargeplanning.pdf A helpful guide to the discharge planning process.

COBRA (Consolidated Omnibus Budget Reconciliation Act)
http://www.dol.gov/ebsa/faqs/faq-consumer-cobra.html
U.S. federal law giving workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances.

Commonwealth Connector
https://www.mahealthconnector.org/portal/site/connector/
This site provides information and links to Massachusetts health insurance, including Commonwealth Care, the health insurance program for low-income individuals, and Commonwealth Choice.

Health Care for All
http://www.hcfama.org
1-800-272-4232
Health Care for All seeks to empower Massachusetts consumers to know more about our health care system and to become involved in changing it. Its HelpLine is a free resource that answers questions about health coverage in Massachusetts.

Health Law Advocates
http://www.healthlawadvocates.org/
Health Law Advocates provides free legal assistance to low and middle income residents of Massachusetts facing barriers to health care treatment.

HIPAA (Health Insurance Portability and Accountability Act)
http://www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html
U.S. federal law governing group health insurance plans, privacy of medical information, and limiting exclusions of coverage due to preexisting conditions.

MassHealth (Massachusetts Medicaid)
MassHealth types of coverage:
http://www.mass.gov/

MassHealth applications and member forms:
http://www.mass.gov/

Medicare
www.Medicare.gov
U.S. government website that provides information on Medicare benefits, as well as comparison information about home health care agencies, nursing homes, and information about other Medicare programs.

Medicare Rights Center
www.medicarerights.org
Medicare Rights Center is the largest independent source of information and assistance about Medicare in the United States. MRC provides clear information for consumers through its website, the biweekly e-newsletter, Dear Marci, and its hotline.

Medline Plus
http://www.nlm.nih.gov/medlineplus/
This website provides information on diseases, illnesses, health conditions and wellness issues, prescription drugs, over the counter medications, herbs and supplements. It is an excellent starting place for this information.

Needy Meds
www.needymeds.com/
This non-profit agency provides information on prescription drug assistance programs. This site also has links to free and low cost health clinics throughout the country, disease based assistance, and discount drug cards.

Pre-Existing Condition Insurance Plan (PCIP)
http://www.healthcare.gov/law/provisions/preexisting/index.html
The Affordable Care Act created a program to make health coverage available to individuals who have been denied health insurance by private insurance companies because of pre-existing conditions. This site provides information and links to plans in each state.

Work and Leave:

ADA Amendments Act of 2008, JAN
http://www.jan.wvu.edu/bulletins/adaaa1.htm
JAN provides a clear summary of the Americans with Disabilities Act as of January 2009.

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

FMLA (Family and Medical Leave Act)
http://www.dol.gov/whd/regs/compliance/whdfs28.htm
Current regulations of the U.S. federal Family and Medical Leave Act.

JAN, the Job Accommodation Network
http://askjan.org/
JAN is the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues. JAN's staff provides one-on-one guidance on workplace accommodations, technical assistance regarding the Americans with Disabilities Act (ADA) and related disability legislation, and self-employment and entrepreneurship options for people with disabilities. Assistance is available both over the phone and online.

One-Stop Career Centers
http://www.servicelocator.org/
This site links to local career centers in the U.S. which provide job seekers and employers assistance with job search, training resources, and issues around economic development.

Vocational Rehabilitation Agencies-State Listing,
http://askjan.org/cgi-win/typequery.exe?902
State vocational rehabilitation agencies assist individuals with disabilities who are pursuing meaningful careers with training, education, and funding. Some states have separate agencies for people who are blind.

Work Without Limits
http://workwithoutlimits.org/
This Massachusetts service provides resources and information on employment for people with disabilities, family members, employment service providers, and employers. It's a great starting place.

Workers' Compensation.
http://www.workerscompensation.com/
This national website provides news and information for employees, employers, insurers, and medical providers. It has links to each state's rules, statutes, forms, and professional help relating to workplace injuries and disabilities.

Working with Chronic Illness, Rosalind Joffe
http://workingwithchronicillness.com/
http://cicoach.com/index.html
Rosalind is a coach living with chronic illnesses who has a blog, e-newsletter and publications about working with chronic illnesses. She lives in MA and coaches people via phone.

Other Federal Resources:

Disability.gov
https://www.disability.gov/
This federal website provides links and information about federal, state and local government agencies, educational institutions and non-profit organizations. Information is organized in 10 main subject areas – benefits, civil rights, community life, education, emergency preparedness, employment, health, housing, technology and transportation.

U.S. Department of Veterans Affairs
http://www.va.gov/
Information about benefits, health care, other resources for U.S. veterans.