Nuts and Bolts of Care
The Batten Disease Support & Research Association is the national leader in providing help and support to families and their children living with Batten disease. In this section, you will find helpful links and resources that help with the challenges of daily living.
Since Batten disease is a progressive neurodegenerative disease, affected children and adults are almost always under the care of a doctor who specializes in Physical Medicine, also called a “Physiatrist”. Find a Physical Medicine doctor or physiatrist near you.
The Physiatrist and members of the Medical Care Team assess and prescribe various types of durable medical equipment that assist the child or adult in maintaining his or her mobility, independence and enhancing his or her quality of life.
Tap Into Community Resources
- BDSRA offers assistance in obtaining prescribed items, specifically referrals to federal, state and local community resources that can help fund the purchase of durable medical equipment. Contact the BDSRA office at 1-800-448-4570 or email@example.com for more information or to obtain help with finding community resources in your area.
Donate Equipment in Good Condition
- BDSRA accepts donated durable medical equipment that is in good-condition and gently used – including lightweight wheelchairs, shower chairs, lifts, standers if there is a known recipient for such an item. BDSRA pays for shipping to the recipient. To request an item or to donate an items, contact the BDSRA office at 1-800-448-4570 or firstname.lastname@example.org
Recycle Equipment in Your Community
- BDSRA directs families to the Pass It On Centers: http://passitoncenter.org/ which is a national network of centers that foster the reuse of assistive technology and durable medical equipment throughout the country. These programs promote safe and appropriate practices for the reuse of assistive technology or durable medical equipment.
This site Identifies organizations and programs to help pay for prescription drugs, food and health care. Caring for a special needs child often makes it difficult for one or both parents to work outside the home. This source can direct you to available help in your community.
Make A Wish
Make A Wish grants the wish of a child diagnosed with a life-threatening medical condition throughout the United States and territories. Families are given the opportunity to make lasting memories together.
Social Security Administration
Read more about applying for SSI benefits by blogger Molly Clarke:
Social Security Disability Benefits for Children with Batten Disease
Batten disease is a progressive illness that affects the nervous system. Symptoms of Batten disease typically appear slowly and worsen over time. These symptoms include vision impairment, seizures, behavior changes, difficulty learning, and clumsiness. As the disease progresses, children will need increased levels of support.
As a parent of a child with Batten disease, you will likely have to spend time away from work. When paired with the expenses of specialty medical care, the resulting loss of income can cause significant financial and emotional distress.
If your child has been diagnosed with Batten disease, your family may be eligible for financial assistance in the form of Social Security Disability benefits. Disability benefits can be used to help cover everything from day-to-day expenses to childcare to medical bills.
Continue reading to learn more about the benefits available to your child and for information regarding the application process.
Disability Benefit Programs
The Social Security Administration operates two separate disability programs. These programs include Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
- SSDI benefits are offered to disabled workers and their eligible family members. To qualify for SSDI, applicants must have earned income and paid Social Security taxes consistently throughout their careers. Because children do not earn income or pay taxes, the only way a child can qualify for SSDI is if he or she has an eligible parent. This is referred to as an auxiliary benefit or a dependent benefit. Typically however, children will have to qualify for SSI benefits rather than SSDI benefits. Learn more about auxiliary benefits here: http://www.disability-benefits-help.org/glossary/auxiliary-benefits.
- SSI benefits do not have any work history or tax-related requirements. Instead, SSI is offered to disabled individuals who earn very little income. To qualify for SSI, applicants must fall within the financial limits set by the SSA. The SSA will evaluate children under the age of 18 based on a portion of their parents’ income. This process is called deeming. To learn more about SSI financial limits and deeming, visit this page: http://www.socialsecurity.gov/ssi/text-child-ussi.htm.
Compassionate Allowance Program and Medical Criteria
Typically, it takes several months for the SSA to decide the outcome of an initial disability application. However, not all applicants can wait this long. For this reason, the SSA began the Compassionate Allowance program. Under Compassionate Allowance processing, individuals with inherently disabling conditions can be approved for disability benefits in as little as ten days. Fortunately, the SSA recognizes Batten disease as a Compassionate Allowance listing.
To meet the requirements of the Compassionate Allowance listing for Batten disease, you must include specific medical documentation with your child’s application. This should include a record of your child’s diagnosis and should come in the form of the following test results:
- Clinical and neurological examination results
- Blood tests
- Urine tests
- Skin or tissue sampling
- EEG results
- Results from electrical studies of the eyes
- Brain scan results
You should work closely with your child’s doctors to prepare his or her Social Security Disability application. A doctor will help you collect the necessary medical records and can even provide you with a written statement that outlines your child’s condition and limitations.
View the complete Compassionate Allowance listing for Batten Disease, here: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022365.
Applying for Social Security Disability Benefits
In order to apply for Social Security Disability benefits for a child, you must apply in person at your local Social Security office. Make sure that you bring the above-mentioned medical evidence to your appointment as well as documentation of your household income and finances such as pay stubs and bank statements. You should receive a decision regarding your child’s claim within two weeks from the date of your child’s application.
Appealing a Denial of Benefits
While it is not common, there is a chance your child’s application could be denied. If your child is denied benefits, you have 60 days in which to appeal the SSA’s decision. Because Batten Disease is a Compassionate Allowance condition, your child’s appeal will be given priority over the standard appeals that are currently in the Social Security system.
If you do need to appeal a denial of benefits, it may be in your child’s best interests to retain the services of a disability attorney. An attorney can help point out any weak spots in your child’s disability claim, can assist you in gathering the evidence you need in order to strengthen your child’s disability case, and can use current Social Security Disability laws to help your child achieve a favorable appeal outcome. Statistics have shown that applicants who obtain legal representation are more likely to win an appeal than applicants who try to represent themselves.
For more information regarding Batten disease and Social Security Disability benefits visit the following page: http://www.disability-benefits-help.org/compassionate-allowances/batten-disease-and-social-security-disability.
Families facing a diagnosis of Batten disease often need to travel to obtain expert medical consultation and care for their loved one. One resource that may be helpful is Miracle Flights.
Miracle Flights is a non-profit organization headquartered in Las Vegas Nevada, whose mission is to “improve access to health care by providing financial assistance to low income children for commercial air travel.”
The original vision to help children and families access specialized care far from home came to fruition in the heart and mind of Miracle Flights founder Ann McGee. Thousands of donors and volunteers across the U.S. combined to make her vision a reality, and to date, Miracle Flights has coordinated more than 97,000 flights and 53 million miles of medical air travel.
Miracle Flights provides help with:
- Domestic or international travel to U.S. facilities for medical treatment, second opinions and follow-up
- Domestic service dog training and retrieval
- Organ/blood travel assistance
Miracle Flights has recently updated their intake process for flight requests. Eligibility is based on:
- Household income (will consider financial hardships on a case by case basis, as requested)
- Physician referral
- Appointment confirmation
The application process requires several documents, including an Application and a Referral Sheet. To download the forms, visit their web site: www.miracleflights.org. BDSRA recommends that you work closely with your child’s doctor, nurse case manager and hospital social worker so that they can provide the necessary documentation for the application process. Completed referral sheets may be emailed to email@example.com
For further information about Miracle Flights, contact Christina Moon, Director of Programs and Development, at firstname.lastname@example.org or email@example.com. She can also be reached at 702-261-0494 or 800-359-1711.
Have a tip to share about modifying a van? Share it with us at firstname.lastname@example.org and we’ll share with our Batten community.
Links & Resources for vehicle modification
This is a general vehicle review website but by using the search function you can find resources about mobility conversion vehicles (search “conversion”) This (http://www.edmunds.com/mobility/2013/buying-guide.html) is their 2013 buying guide for Mobility Vehicles.
BraunAbility is a world leader in mobility products including vehicles. Their website includes buyer’s guides, information about their products, dealerships that they work with and other resources about mobility.
Adaptive Driving Association
Adaptive Driving Association (ADA) Adaptive Driving Alliance (ADA) is a nationwide group of vehicle modification dealers who provide van conversions, hand controls, wheelchair vans, wheelchair lifts, scooter lifts, tie downs, conversion van rentals, paratransit and other adaptive equipment for seniors and drivers and passengers with disabilities. Their website has many resources including dealership locations and specific information for caregivers. The website also details ways to get financing assistance for your vehicle.
The Mobility Resource
The Mobility Resource is a comprehensive resource for all things mobility related. It includes financing, retailers, equipment reviews and a contact number for any mobility questions you may have. The State Grants page (http://www.themobilityresource.com/financing/state-grants/) lists by state the grants available for vehicle conversion. The financing homepage (http://www.themobilityresource.com/financing/) has additional links to finacing options, promotions, and rebate programs. Their resources page includes a FAQ, a news section, and fact sheets.
The National Mobility Equipment Dealers Association
The National Mobility Equipment Dealers Association (NMEDA) NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles. Their website includes guides about how and what to buy, information on the Quality Assurance Program (QAP), and a dealership locator. Many articles reference NMEDA as a valuable resource and mention that if a dealership is a part of NMEDA you are more likely to get a high quality product. Download the consumer guide to buying a conversion vehicle published by NMEDA.
This website includes tips for purchasing an adaptive vehicle, what you should be looking for and what the dealer should be providing for you.
The Ability Center
The Ability Center is another resource for all things mobility related. This includes a buyers guide for vehicles (http://www.abilitycenter.com/mobility-buyers-guide/).
Articles about vehicle modification
This is an article written by a woman with MS about her experience finding an adaptive vehicle. It includes some tips and resources.
This is an article written by an expert in the field about things you should consider when looking into a mobility conversion.
This is another article discussing answers to commonly asked questions about what type of mobility vehicle should be purchased.
This article discusses buyback programs and buying used vehicles.
Though a little dated this article discuses financing options for accessible vehicles.
This article discusses five questions that are important to look into when choosing a conversion vehicle.