Frequently asked questions banner image

 

If you have a question that is not answered below, please call or write the MT F2F.  Our staff will be happy to share what we know, research an answer for you, or simply listen. 

Our Center is staffed part-time by family members of someone with a disability/diagnosis. Please allow 48 hours for us to get back to you. 

Call us at: (406) 243-4570

Write us at: montanaf2f@umontana.edu

Message us through Facebook at: Montana Family 2 Family facebook page

The MT F2F is led by families, for families.  Because of our families’ needs and other work responsibilities, our staff is part-time. When you call or write us, or message us via our Facebook page, you will receive an autoreply confirming we got your message and will respond within 48 hours. 

As soon as possible, a team member will contact you to learn more about your situation.  If you have a question and we don’t know the answer, we will set a time to get back to you once we’ve been able to do some research or speak to our contacts.

As a grant-funded program, there are a few questions we will need to ask you.  They are straightforward demographic questions; your responses will be used only for data reports required by our grant.

The MT F2F is housed in the Rural Institute for Inclusive Communities on the University of Montana Campus.  The Rural Institute conducts research and offers trainings to improve quality of life for Montanans with disabilities. It houses a number of valuable programs apart from the MT F2F, including the Montana Deaf-Blind Project, RTC: Rural, and MonTECH (Montana’s free access point for assistive technology, adaptive equipment, and 1:1 training).  

These programs are based in Missoula, but serve all Montanans.

If you have concerns about your child’s development, you should bring those concerns to your child’s doctor. Don’t ‘wait and see.’   If you’re correct and there is a delay in your child’s development, early intervention can be crucial. This resource from the CDC might be useful as you prepare to talk to your child’s doctor:  Concerned About Your Child’s Development?

The CDC’s Milestone Tracker App is free, available for both iOS and Android, and can help you determine what is normal development and what may be worth a discussion with the doctor.  Learn more about the app.  

If your child is very young, you may be referred to the contracted agency providing support services and assessments in your region.  Find contact information for the agency in your region.

Finding the right provider for you or a family member is very important and can be difficult.  Some things to consider are distance from your home, insurance coverage, and specialty.  Providers may be found by word-of-mouth, internet search, or asking current providers.  Other parents of children with challenges living in your area may have a Facebook group you could join – members may share with you their preferred providers and why they like them.

The Montana Medical Home Portal is another helpful resource. Search the Portal’s Services Directory by typing in a key phrase or service category and your location.

Care Coordination is the intentional commitment of all members of a patient’s care team to sharing information in order to achieve the best possible health outcomes. A care team can potentially include doctors, nurses, case managers, psychologists, counselors, therapists, and pharmacists.  Family members/caregivers are important members of the care team, and care coordination is considered a patient- and family-centered approach.

Care Coordination ideally means improved communication and collaboration, lower risk of redundant or unnecessary tests and procedures, treatment of the whole person versus one aspect, better medication management and after-care follow-through, and improved experience and outcome for the patient and family.

Before moving to Montana, do your homework about the community where you plan to live.  Most services in Montana are community-specific and often nonprofit and/or parent-driven.  The MT F2F can help connect you to someone in the community who can share more about what is offered from an insider’s viewpoint.

One important thing to know about services in Montana: as of October 2020, Montana is the only state that does not offer public education through age 21 for students with disabilities.  Depending on the community, a district may offer a ‘super senior year’ (in other words, a second senior year).  But not all districts do so. 

Regarding services provided by the state, these are limited primarily to Montana’s Home and Community Based Waivers.  These waivers were created to help support individuals who would normally (in times past) require an institutional level of care. Waivers provide health coverage through Medicaid as well as a cost plan to help with approved expenses. You can find information about Montana waivers here, although the information is a bit dated. For example, Montana no longer provides the Montana Children’s Autism Waiver. 

For most of our families with disabilities, there are two primary waivers to consider:  the Montana Big Sky Waiver (physical disabilities) and the 0208 Comprehensive Waiver (developmental disabilities). You can learn more about these waivers by going to the Montana Department of Public Health and Human Services, or by taking a look at the Waiver page on the MT F2F web site.

All U.S. states and territories have at least one Parent Training and Information Center (PTI). PTIs work with families with kids from birth to age 22 who have a disability. They help families understand their children’s rights to a Free and Appropriate Public Education (FAPE), and their rights under the Individuals with Disabilities Education Act (IDEA).

PTIs also help families learn how to advocate for their children in the educational system and address specific challenges with their school teams. Montana’s PTI is the Montana Empowerment Center, Inc.

If your child requires specialized medical care at school to support their health and safety, care needs should be included in your child's Individualized Education Plan or as an accommodation in the 504 Plan.  This process can be complicated, particularly in rural areas or districts with fewer resources that do not have a school nurse on-site.  If you run into difficulties, you may want to involve Montana’s PTI, the Montana Empowerment Center, as well as your child’s medical care team.

If you need to borrow a laptop, tablet, web cam, or wifi hot spot to participate in online medical appointments and therapies, you can borrow those devices for free from the state’s assistive technology program, MonTECH.  MonTECH loans assistive technologies and mobility equipment to any Montanan with a disability or diagnosis. The program ships anywhere in Montana for free (borrowers pay return shipping). MonTECH also offers free 1:1 support if you need help determining what you need or how to use it.  Contact MonTECH at (406) 243-5751, montech@mso.umt.edu

If you don’t have internet access, your local library may be able to help by loaning you a mobile hot spot.  Hot spots allow you to connect your smart phone, tablet, or laptop to internet available in your area. In other words, if your neighborhood or town has internet, you can access it through a hot spot even if you don’t personally pay for internet access.  You can learn more by contacting your local library or visiting the state site.

COVID-19-related federal funding has meant the creation of some new supports for tele-health and remote education.  The MT F2F can help you research those programs to see if any can help your family.

When your child with a disability turns 18, your parental authority ends.  But the question really isn’t when to set up guardianship, but rather, is guardianship the right choice for my child?

Because there are other options, and each option takes time to set up, you should begin thinking about this well in advance of your child’s 18th birthday.  (Guardianship, for example, can take 1.5 years to set up.)

Learn more about other options, least restrictive to most restrictive, by reading the Alternatives to Guardianship manual produced by the Rural Institute for Inclusive Communities at the University of Montana. If you have questions, the MT F2F can refer you to someone knowledgeable about these options.

Open enrollment for 2020 runs November 1st – December 15th.  This is the time you can make changes to your insurance coverage without having a ‘qualifying life event.’ Families can find public and private health insurance by shopping the health insurance marketplace.  

You may qualify for Montana Medicaid, a publicly funded health insurance program. Your children may qualify for Montana’s Healthy Montana Kids, a free or low-cost insurance plan for eligible children up to age 19.

Before shopping for insurance, gather the information you need in advance.  Consider using this checklist so you’ll have the information at hand when you need it.

We hear you. We understand how lonely this journey with your child can be.  It’s easy to connect with social media groups that are diagnosis-specific, but online support is not the same as a personal conversation, or potential relationship, with a caregiver walking a path similar to yours.

The MT F2F can help connect you to a caregiver with personal experience aligned with your own.  We have both state and national resources we can access, so even if your loved one’s condition is rare, we should be able to connect you with someone who can provide the understanding and support only a fellow traveler can.

Doctors use genetic testing to look for missing or defective genes.  Shodair Children’s Hospital in Helena has a medical genetics program and lab.  They provide testing and follow-up.  They can work with your provider to recommend and initiate appropriate metabolic and genetic testing. 

Your provider can make a referral for genetic testing, or you can refer yourself or a family member. If you have general questions about genetic testing, call (406) 444-1016. Shodair also has an on-call genetics counselor to answer your questions: (406) 444-7530. There may also be genetic counselors in your community or doctor’s office. 

If your child's diagnosis is a behavioral or mental health diagnosis, genetic testing may provide medical and chemical clues to some of the underlying root causes of your child’s struggles. In some instances, this can lead to treatment in the form of medication, nutrition, or access to clinical trials.

In other instances, these clues may provide guidance to you as a parent and your child's clinical team on ways to better support and manage your child's diagnosis to help them live well and thrive. Genetic test results can also help your child’s typically developing siblings be informed as they consider having children themselves.

Preparation will look different depending on the emergency or natural event you’re trying to anticipate, but when you have a child with a diagnosis, advance preparation is critically important. Have a plan and supplies on hand to ensure your child will receive the care she requires even in a chaotic situation.

Some things to consider:  current medical information and a list of current medications stored in a plastic (waterproof) bag, an emergency supply of medication (talk to your child’s doctor – her intervention with insurance and the pharmacy may be required), chemical ice packs and a cooler if any medications require refrigeration, some form of identification for each child in case of separation, medical and personal care supplies your child uses (needles, cannulas, diapers, wipes), batteries and an AC adaptor for your car to charge smaller electric equipment, a manual chair to use in place of a power chair, a self-calming kit for your child’s comfort.

If your child uses a ventilator or similar support, consider buying a generator for back-up.  Some insurance programs will help purchase generators for this purpose. There is also the possibility of getting help purchasing a generator through the state’s financial assistance program.

The following resources provide more detailed lists and additional links for emergency preparedness for your child with a disability/diagnosis:

https://www.cdc.gov/childrenindisasters/checklists/special-healthcare-needs.html

https://blogs.cdc.gov/publichealthmatters/2019/12/preparing-children-with-special-healthcare-needs-for-an-emergency/

https://www.ready.gov/plan