We are aware that there are costs that families incur when traveling to this event that could possibly impede their participation. In an effort to assist you, we have put together a list of Funding Agencies that offer grants to families to defer conference travel expenses. Special acknowledgement to the Aicardi Foundation for compiling many of these helpful pointers.
NATIONAL AGENCIES OR GROUPS
The ARC of the United States. Each chapter offers different programs/services, so you need to check your local chapter: http://www.thearc.org/find-a-chapter. As an example, the ARC of IL offers a Consumer Stipend Project which offers grants to enable people with developmental disabilities and their family members to attend conferences of their choice that are directly related to developmental disability issues:http://www.thearcofil.org/programs.
STATE AND/OR REGIONALLY LIMITED
All states have Councils on Developmental Disabilities, and some will fund conference travel. Some states require that you agree to share the knowledge you gained at the conference with others groups in your state (and we would recommend that you target schools/classrooms with other students with DS as your point of sharing, as often there is not another family with DS nearby). We have tried to identify all the active programs across the United States, but if your state is not listed below, you should take a minute to review your own state’s CDD page in case we have overlooked something. Click here for a roster of Developmental Disabilities Boards by state: http://www.nasddds.org/state-agencies/ Click on your state and then on “county boards” and select your county of residence. Funds are typically appropriated at the beginning of the year on a first-come, first served basis.
For states that are not listed below, if there was no specific link to a consumer investment/empowerment fund, it does not mean there is not such a fund in your state. Contact the council directly and inquire if they have available grants to help families & individuals with disabilities to attend conferences relating to that disability.
Colorado: families may be able to get funding from a CCB (community centered board) depending on where they live. Check with your medicaid/medicaid waiver case manager or CCB Family Support Services divison for information on what is available.
Utah: has an Empowerment Fund designed to support family attendance at disability-related conferences, but the information has not been updated since 2009. If you wish to pursue this, call first to make sure that the funds are still available and procedures are clear. http://www.utahddcouncil.org/grants/empowerment/index.html
MEDICAID/WAIVER PROGRAM ENROLLEES
If your child is on Medicaid, especially a home and community based waiver, check with your case manager. Many waivers offer educational assistance for parents to attend conferences, paying the registration fee. Travel is not typically covered, but it is worth asking about.
OTHER POTENTIAL FUNDING SOURCES
Funds may also be available through your church or synagogue; your local United Way, Kiwanis, Rotary or Lions Club.
PREPARING TO APPLY
Some organizations may not have a form to fill out—in that case, you will need to write a letter or a personal statement and submit that. Here are some suggested guidelines for what to include in that letter (with thanks to FamilyConnect.org for the model). It may be that some of these are not relevant to you—they are meant only to serve as a guideline, not to be followed rigidly.
A summary statement: “I am asking for your financial assistance in providing travel and convention funding necessary so that I/my family may attend the Dravet Syndrome Foundation Day of Dravet Workshop in Colorado Springs on September 23, 2017.”
Introduce your child and explain Dravet Syndrome: “My child, _____, is _____ months/years old and has Dravet syndrome. Dravet syndrome is a rare and intractable form of epilepsy. It causes frequent, hard-to-control seizures and a range of significant physical and cognitive disabilities; and risks of early mortality. Details about the syndrome can be found at the Dravet Syndrome Foundation website:http://www.dravetfoundation.org. [You should add a few details here about your child’s personality or the severity of the presentation of symptoms, etc., to help personalize the request.]”
A statement of the costs: How much will it cost (which you should probably work out before you write this section) and how much of the costs will you be able to come up with on your own.
A statement of your goals in attending the workshop: “By attending the workshop I hope to gain valuable information in order to enrich my family’s relationship with, and to provide the best possible support and care for, our child with Dravet syndrome. The workshop will also provide enormous family support as we make connections with other families affected by this rare, and sometimes isolating, disorder.” [You might also here indicate if your child has siblings who would be attending and if that would be a particular benefit. You may want to mention the Siblings Camp.]
Procedures of the conference: “Day of Dravet is a one day workshop, with sessions geared toward coping skills of parents, educational and medical know-how in parenting our children, important updates from top scientific researchers in the field, as well as social activities for Dravet children, their siblings, and parents.” You might also want to include the event agenda and/or list of confirmed speakers.
A detailed budget: “Our plane tickets will cost $_____. Taxi fare from the airport (round trip) will be $_____.” Or, “We will be driving our own vehicle ____ miles to the conference and back. Mileage expenses for the trip will be ______ . [here, use the IRS formula for medical transportation of .23/mile (https://www.irs.gov/Tax-Professionals/Standard-Mileage-Rates)]. You could also add any hotel stays and costs of meals that you will have in transit to the conference.
Don’t forget that, even if you aren’t able to find a grant to assist you, some of the expenses you incur in travelling to a conference at which medical information is shared is CURRENTLY tax deductible if you itemize your medical expenses on your federal tax return. See “medical conferences” here for rules: https://www.irs.gov/pub/irs-pdf/p502.pdf.
We hope that these resources are helpful, and please let us know if you are successful in obtaining a grant, as we would like to keep track of funders who have been supportive. Or if you have additional funding suggestions, please email Mary Anne to have them added here.
Dravet Syndrome Foundation
PO Box 3026
Cherry Hill, NJ 08034
Questions? Contact Mary Anne at email@example.com