S.O.S. We Need Help!
By Holly Bortfeld
Crisis can happen to any family, at any time. Getting help before you reach crisis mode is your best bet to getting out of the crisis, and will allow others to help you before it’s too late. Once a family is in crisis, particularly financial, the solution is much harder to come by. Our goal is to help families know the signs and to send up a flag BEFORE the situation gets to such a critical state. It is much harder to help a family while in a major crisis when the options become very limited, if available at all.
In more than a decade of providing support, we have witnessed many families living with autism in and out of crisis. In this time period have experienced many panicked, frantic families come to us, especially in this economy. Fortunately, there is much help to be had.
The types of crises are financial, physical, emotional, legal and services. Some family crises can include:
- When the family’s money runs out
- When a bad divorce starts
- When the child/family has to move
- When the electricity goes out and the family needs to evacuate
- Grandmother or grandfather die and were big part of the caregivers for the ASD child.
- When mom (or primary caregiver) goes into hospital or is otherwise incapacitated
- When CPS (Child Protective Services) knocks at the door
- The child’s SSI or Medicaid or other funding was cut off
- When the child or a family member is in danger
1. Financial Emergency
There are few financial resources that work well in emergency mode so if you are a family getting near financial disaster, make sure read our “Autism on Public Assistance” article that includes a resource list for emergencies and grants. http://tacanow.org/family-resources/autism-on-public-assistance/
If you are already in full-blown emergency when you read this, go through the list of services available on the “Autism on Public Assistance” resource lists and apply for grants, if applicable.
2. Physical Emergency
- When the primary caregiver is unable to care for a child (due to illness, death or if they move away, etc), it can become a real emergency since there are very few day care centers or after-school care programs available for children with autism. However, if a public school has an after-school program for non-disabled children, they must also take children with disabilities.
- Check with your state’s Medicaid/Medicaid Waiver system to see if respite care is available.
- States have Emergency funds available for just this type of situation. Contact your state Medicaid/Medwaiver or Developmental Disabilities agency to find out what is available in your area.
- Evacuating due to fire, hurricane or other natural disaster is not uncommon. You will find contact information for natural disaster emergencies on the “Autism on Public Assistance” resource list.
- TACA has assisted many families in a major emergency including fires. A detailed description on what to do can be found http://tacanow.org/family-resources/helping-children-with-asd-adjust-to-the-major-fires/
- Transportation is critical to a family. If the child receives Medicaid, you can be transported to, or reimbursed for mileage, to all Medicaid-physician-prescribed non-emergency doctor and therapy appointments. While it doesn’t solve all of your transportation needs, at least your child can get to and from medical and therapy appointments. Ask your Medicaid caseworker, or Google search “Medicaid transportation (and your state)” for program information.
- Physical danger in the home or school is a different issue. If the child is in physical danger in the school or other setting, contact a lawyer and/or contact CPS to investigate.
3. Emotional Emergency
From time to time families may have an emotional emergency, such as a crumbling marriage, stress from the family’s or child’s situation, or any other situation that the parents or other family members are not coping with well. Health insurance may cover individual or family therapy, but maybe not marriage counseling. The Salvation Army, and other agencies, can help, please see the “Autism on Public Assistance” resource list.
4. Legal Emergency
Divorce, School or CPS are the most common legal needs for ASD families.
- For most legal needs that are disability-related, contact http://www.napas.org to get free legal help.
- For educational advocates and Lawyers, contact http://copaa.org or www.wrightslaw.com
- Read this article on Divorce: http://tacanow.org/family-resources/divorce-advice-for-special-needs-families/
5. Services Emergency
- If your family has their SSI or Medicaid cut off, you were notified of the reason, usually you made too much money to qualify during the month. Medicaid is NEVER legally cut off without notification and appeals to the office manager with proper documentation are usually handled very fast.
- If your family is threatened with eviction due to noise or other disability-related issues that do not involve money, there is a federal housing law that protects you. More information is available at www.hud.gov (go to the fair housing link). If the landlord tries to evict, you can file a fair housing complaint with HUD: http://www.hud.gov/complaints/housediscrim.cfm
Spend your money wisely
Money is in short supply everywhere in this economy. There are just a fraction of the helpful agencies there used to be. You have to learn how to get what you need, with the least out-of-pocket you can. This article outlines the many ways to utilize existing resources first.
Knowing WHO is supposed to pay for therapies and services is the first thing you should know! http://tacanow.org/family-resources/who-pays-for-what-a-guide/
There are many grants in the autism community to help you. These range from doctor visits, treatment, medical travel, counseling, prescriptions and more. Please see the list at: http://tacanow.org/family-resources/autism-on-public-assistance-resource-list/
Preparing for Your Special Needs Child’s Future By Planning for Your Departure
This page provides a long list of things you can prepare for FREE.
Legal Planning & Special Needs Trusts
Proper planning for your child’s future requires documentation: Wills, Power of Attorney and Special Needs Trusts all require a lawyer. http://tacanow.org/family-resources/legal-planning-special-needs-trusts/
TACA’s Parent Mentors are trained and able to help you navigate the system to help you find what you need to help your child. Apply at http://tacanow.org/about-taca/parent-mentor-program/
Private health insurance can cover most tests and treatments if you know how to code properly. http://tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
Know what you can write off annually http://tacanow.org/family-resources/tax-strategies-for-parents-of-kids-with-special-needs/
Ways to Save on Treatment:
Plot your course with TACA’s Autism Journey Blueprints
GFCFSF Diet On A Budget
GFCFSF Diet On Food Stamps!
Yes, you can! We did the diet for an entire family of four, three meals a day for under $320 a month!
Plenty to be had! Many food programs exist in the USA and most can fit the diet!
Know what you are buying. This is a very readable primer for Medical Treatments
Medical Treatment on a Budget
The Last Resort
The other crisis we occasionally get is the hardest, for everyone involved. When stress, money, sleep deprivation, safety, emotions and autism collide, a family may come to TACA for help with finding another place for their child to live.
Obviously this is the hardest situation to deal with for a number of reasons. The uncertainty alone may engulf you, but if this is something you absolutely must do as a last resort, this is what you need to know.
To find local placements, you can Google “residential placement autism” and your state. Please know that most will have a waiting list. They will also be extraordinarily expensive so you will have to get state funding, if you don’t already have it, to cover the costs. You would contact those same agencies – SSI, Medicaid, Regional Center, Developmental Services, Children and Family Services (aka Child Protective Services) – to find out the process in your area and which placements each may cover.
If it’s an emergency, call http://www.childwelfare.gov/pubs/reslist/rl_dsp.cfm?rs_id=5&rate_chno=11-11172
Here is an article that explains how to choose a residential placement. http://www.autismafter16.com/article/10-24-2011/group-homes-finding-and-assessing-residence
The old saying “An ounce of prevention is worth a pound of cure” is very true especially for families affected by autism. There is so much help in our community. Please remember one key fact: YOU ARE NOT ALONE. You don’t have to go through this alone. There are many things you can do to help yourself and your family. Seek help before it becomes a crisis for the best outcome possible but SEEK HELP before it’s too late. TACA is here to help. Remember, we’re parents too.