Amyotrophic Lateral Sclerosis (ALS) Workgroup Consensus Document Published The latest monograph in the Promoting Excellence in End-of-Life Care Peer Workgroup Recommendations to the Field series is now available. "Completing the Continuum of ALS Care: A Consensus Document" presents recommendations that culminate nearly three years of careful study and deliberations of the multidisciplinary Amyotrophic Lateral Sclerosis (ALS) Peer Workgroup, chaired by Hiroshi Mitsumoto, M.D., Director of The Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University. The recommendations address different aspects of care through the end of life for patients with ALS and their families. They describe steps needed to improve palliative care for ALS patients and are focused in the areas of psychosocial care, bereavement, spirituality, quality of life, ethics, communication and decision making, access to care, cost of care, family support and physician knowledge and education. Recommendations are also included for symptom management in ALS, issues of life completion and closure and medical management during the last days and hours of life. A CD-Rom accompanying the report contains appendices with many valuable resources. Find the guide and supplementing appendices at: http://www.promotingexcellence.org/als/als_report/ Muscular Dystrophy Association (MDA) ALS Services: New York Many people do not realize that the Muscular Dystrophy Association (MDA) supports a comprehensive program of services and research for adults and families affected by ALS, also known as Lou Gehrig’s disease. For ALS, MDA spends more dollars on patient care, medical equipment, support groups, resource material and research than any other voluntary health agency. Clinics MDA provides grant funding to several clinics in New York offering comprehensive care for the diagnosis and medical management of ALS and other motor neuron and neuromuscular diseases. Physicians who specialize in the treatment of neuromuscular diseases and allied professionals such as physical, occupational and speech therapists work with a team approach to address the myriad of symptoms related to ALS. MDA clinic physicians communicate closely with referring doctors to manage day-to-day issues of living with this disease. Support Groups MDA/ALS support groups offer practical information and emotional support in dealing with the stress and strain of living with ALS. Patients and extended family share resources and personal hope, which often helps to reduce feelings of isolation and increase knowledge of the how, when, where and why’s of ALS care and research. Guest speakers are invited to address topics including legal and financial matters, practical management of symptoms, additional community resources and other related issues. Research In New York alone, MDA is currently funding grants totaling over 1 million dollars for research specifically targeted to ALS. MDA supported scientists are in the forefront of ALS research and several MDA clinics have on-going clinical trials to test the effectiveness of a variety of drugs and other substances. Having invested nearly $100 million in the battle against ALS, MDA continues its aggressive search for better therapeutic treatments. Communication Devices MDA will pay for communication technology for people with ALS who require assistive devices for speech augmentation. The MDA will allow up to $2,000 for the one-time purchase of a communication device such as a speech generator or speech synthesizer. An MDA clinic physician must prescribe these aids, known as alternative and augmentative communication devices. Their purchase is covered by Medicare and by some private insurance policies; therefore MDA will assist with costs not covered by these programs. Medical Equipment MDA assists with the purchase and repair of wheelchairs and leg braces up to $2000 per wheelchair and per brace after insurance. Additionally, the MDA has loan closets with a varied selection of equipment such as walkers, hospital beds, bathroom safety equipment, and hydraulic lifts. Flu Vaccinations MDA provides flu vaccines annually for patients cared for in an MDA clinic. Awareness and Fundraising Activities The MDA promotes ALS awareness on national and local levels through educational symposia, support groups, information days and through community outreach programming form MDA Clinics. Raising funds for ALS research in NY city alone has risen in the at few years, along with continued efforts nationwide from MDA national. The Wings Over Wall Street (originally Wings of Hope for ALS) annual autumn event historically has raised more money for ALS research in single night than any other event in NYC. MDA publishes materials with useful information for families living with ALS. To learn more visit the ALS Division of MDA at http://als.mdausa.org/ HOW TO ADVOCATE FOR YOUR RIGHTS by Andrea Versenyi, CSW Patient Services Director of the ALS Association Greater New York Chapter Many families, already overwhelmed by the task of dealing with ALS, say they have neither the time nor the energy to appeal health care decisions with which they disagree. It is true that these appeals do take time; however, the potential benefit from getting a “yes” often outweighs the burden of pursuing an appeal. Knowing how the appeals process works and how you can use it to your advantage can make the process easier and shorter. Following is a brief outline of where you should go if you feel your needs are not being met. If you are being denied coverage by your health insurance company and feel that the denial is in error: If you are being denied coverage by your health insurance company and feel that the denial is in error: Request that a case manager be assigned to you. Most of the people you deal with at the insurance company may not have a complete understanding of ALS; a denial may be issued out of ignorance rather than heartlessness. A large part of the appeal process will be to educate those determining your care. If you have one person assigned to your case, it is easier to undertake the education process. Ask what the appeal process is. All insurers will have both an internal appeal process (where the appeal stays within the insurance company) and an external appeal process (where the appeal is reviewed by a person or agency that is not connected to your insurer.) Every insurance company must have a clearly defined appeal process and must advise you of that process and the time frame in which they must respond to you. Determine why the coverage is being denied. The two most common explanations are: 1) the service is not considered medically necessary and 2) the service is not covered under your policy. If the service is being denied due to lack of medical necessity, APPEAL. Read through your policy or check your employer’s “Master Provider Plan”. Look for the vocabulary used in the policy to explain when a service is considered medically necessary. Then ask your physician to write a letter of medical necessity using as much of the plan’s specific language as possible to explain why you merit the service. If the service is being denied because the insurer states it is not included in your policy, again review your policy and your employer’s Master Provider Plan. Check all the definitions and exclusions. You may find that the service is covered, in which case, APPEAL. If, in fact, the service is not covered, you can ask your employer to advocate for you. If you work for a major customer of the insurance company, ask them to say “we know this is out of plan, but this is important to us.” They may be able to sway the insurance company. If you are denied a referral to an ALS specialist or multi-disciplinary team by your HMO because they state they provide services by the same disciplines (ie, neurology, PT, OT, SLP, etc.), write them a letter clearly stating “you do not have ALS specialist or team care in your network. Therefore, you do not provide this service. If you do not approve a referral for ALS-specific care, I will pursue legal action.” This may be effective even if you are not prepared to go that next step and consult a lawyer. Back up all requests for an appeal in writing. To give added weight to your appeal, send the State Department of Insurance consumer complaint board a copy of the letter you send to your insurance company. Clearly mark this on your letter; let your insurer know you understand the system. In New York , send a copy of your letters to: Consumer Services Bureau New York State Insurance Department Agency Building One If Medicare provides your coverage, you also have access to internal and external appeals processes. The contact information for appeals will be written on the back of your denial. Unlike with other insurers, there is no prior approval necessary under Medicare; however, this does not guarantee coverage. The most commonly contested areas of coverage under Medicare are that of durable medical equipment, prosthetic or orthotic device claims. The claims are handled by four regional insurance companies (“durable medical equipment regional carriers” or DMERCs) who contract with Medicare to review all such claims DMERC Claims for families in New York and New Jersey are handled by DMERC Region A United Healthcare PO Box 6800 Wilkes-Barre, PA 18773-6800 800-842-2052 tel. 717-735-9402 fax Appeals Process – with all levels of the appeals process, it is recommended that the appeal be filed as soon as possible. There is no benefit to delay. Also, all requests for appeal should be in writing and be sent “certified mail, return-receipt requested..” Initial Decision – the DMERC staff must respond to your initial request within 60 days. If you receive a denial, or receive no response at all within 60 days, you move to the next level of appeals: Reconsideration – the request for reconsideration must be received by DMERC no later than six months after the initial decision was received. DMERC must respond to you within 45 days. Carrier Hearing – if you again receive a denial, the next step is DMERC Carrier Hearing. These requests must, again, be filed no later than six months after the initial decision was received. In order to qualify for a Carrier Hearing, the equipment being sought must be $100 or more. You must follow the instructions for requesting a hearing stated in the DMERC letter. A DMERC staff person who was uninvolved in the previous decisions conducts the Carrier Hearing. Furthermore, it can be conducted either on the record (review of documentation), by telephone or in person. An on the record documentation may result in a quicker decision. Decisions from a Carrier Hearing must be issued “as soon as practicable.” If the decision is not issued within 60 days of the request for a hearing, you should file for the next step, an ALJ hearing. Decisions should always be issued within 120 days after your request for a hearing. Administrative Law Judge (ALJ) Hearing – This appeal is the first point in the appeals process where your request is reviewed by someone outside the Medicare system. This request should be filed immediately upon receipt of a denial. Written request for ALJ hearings must be filed no later than 60 days after the carrier hearing decision is reached. In addition, the Medicare reimbursement being sought must be $500 or more. You may request an ALJ hearing by writing to the address stated in the carrier hearing decision. Most often, this is the stage where one can expect approval of one’s claim. If the ALJ level does not result in an approval, you still have two more levels of appeal: the Departmental Appeal Board and a Judicial Review. These two steps are more time-consuming, and often require the assistance of an attorney. If Medicare provides your coverage, you also have access to internal and external appeals processes. The contact information for appeals will be written on the back of your denial. Unlike with other insurers, there is no prior approval necessary under Medicare; however, this does not guarantee coverage. The most commonly contested areas of coverage under Medicare are that of durable medical equipment, prosthetic or orthotic device claims. The claims are handled by four regional insurance companies (“durable medical equipment regional carriers” or DMERCs) who contract with Medicare to review all such claims DMERC Claims for families in New York and New Jersey are handled by DMERC Region A United Healthcare PO Box 6800 Wilkes-Barre, PA 18773-6800 800-842-2052 tel. 717-735-9402 fax Appeals Process – with all levels of the appeals process, it is recommended that the appeal be filed as soon as possible. There is no benefit to delay. Also, all requests for appeal should be in writing and be sent “certified mail, return-receipt requested..” Initial Decision – the DMERC staff must respond to your initial request within 60 days. If you receive a denial, or receive no response at all within 60 days, you move to the next level of appeals: Reconsideration – the request for reconsideration must be received by DMERC no later than six months after the initial decision was received. DMERC must respond to you within 45 days. Carrier Hearing – if you again receive a denial, the next step is DMERC Carrier Hearing. These requests must, again, be filed no later than six months after the initial decision was received. In order to qualify for a Carrier Hearing, the equipment being sought must be $100 or more. You must follow the instructions for requesting a hearing stated in the DMERC letter. A DMERC staff person who was uninvolved in the previous decisions conducts the Carrier Hearing. Furthermore, it can be conducted either on the record (review of documentation), by telephone or in person. An on the record documentation may result in a quicker decision. Decisions from a Carrier Hearing must be issued “as soon as practicable.” If the decision is not issued within 60 days of the request for a hearing, you should file for the next step, an ALJ hearing. Decisions should always be issued within 120 days after your request for a hearing. Administrative Law Judge (ALJ) Hearing – This appeal is the first point in the appeals process where your request is reviewed by someone outside the Medicare system. This request should be filed immediately upon receipt of a denial. Written request for ALJ hearings must be filed no later than 60 days after the carrier hearing decision is reached. In addition, the Medicare reimbursement being sought must be $500 or more. You may request an ALJ hearing by writing to the address stated in the carrier hearing decision. Most often, this is the stage where one can expect approval of one’s claim. If the ALJ level does not result in an approval, you still have two more levels of appeal: the Departmental Appeal Board and a Judicial Review. These two steps are more time-consuming, and often require the assistance of an attorney. Medicaid has a clear “Fair Hearing” procedure that will be indicated on any letter of denial. Again, appeal quickly. Fair hearings are generally conducted by intelligent, objective parties and often result in overturning the initial decision if you have a good case. Finally, if you still receive a denial of services you feel are covered by your policy and medically necessary, it is useful to ask the insurance company what physician’s name is on the final record of denial. It is important for the insurance company to know that you and your doctor feel the requested services would prevent further complications or injury and want, therefore, to know who is taking responsibility for the denial of services. While this is not a formal appeal, it is, again, a message to your insurer that you are keeping track of what they do and will hold them accountable for complying with their policies. Stay tuned for more articles and updates on your rights as a medical consumer!