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How to Start a Parent Group in Your Community - Jeanine Pinner 1

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How to Start a Parent Group in Your Community

Jeanine PinnerTraining & Outreach Coordinator

Texas Parent to Parent


Why Start a Parent Group?

We all have a need to belong to a

community that embraces and

welcomes us

• We may not feel “welcome” at the typical places that build important community ties

• church, play groups, school or sports events, etc.

• Many families give up and stay home because they don’t feel welcome at community activities.

Community is more than a place we go. It is the

people we know. Our relationships form the

foundation of those connections. They bind us

together and help us laugh, cry, and share our

experiences. Our work is really to utilize our

connections, our passions and our relationships to help

connect others to community. This can only be done

through people. The greatest fear is not failure, but

loneliness. If people with disabilities are not part of

community’s fabric and mosaic, it can never be whole.

We have to figure this out….And now!

Family to Family Network http://www.familytofamilynetwork.org/

One way to develop those community ties is to create a parent group for

families of kids with disabilities, chronic illness and other

health care needs in your own area.


As a group, individuals share and receive support and information, and what we learn by connecting with each other helps us, in turn, build support and community for

ourselves.

Easy Forms of Community Building

• Informal Support Groups– Moms’ Group

– Dads’ Group

– Sibling Group

– Disability Specific Group, etc.

• Moms’ Pampering Day

• Equipment Closet

• Listserv

More Complicated Forms of Community Building

• Respite Program

• Emotional Support Groups

• I & R (Information and Referral)

• Resource List/Directory

• Lending Library

• Newsletters

• Crisis Assistance Funds


Very Complicated Forms of Community Building

• Parent to Parent Matching

• Family Support Cooperative (weekly or monthly meetings)

• Special Education Assistance

Informal Support Groups

Moms’ GroupDads’ GroupSibling Group

Disability Specific Group, etc.

Informal Support Groups: What You Need

• volunteers to plan and organize

• place to meet

• ways to advertise

• child care and snacks, if possible


• these groups can be formed for almost any type of group you might want

• no facilitator is necessary

• the purpose is just to talk informally and share experiences

• inviting a speaker or someone to present on a topic like Special Education or local resources might help get the group started

• you can meet almost anywhere and anytime (library, church, restaurant, park, etc.) unless you want to provide child care

Informal Support Groups:Who, What, When, Where?

Informal Support Groups:Who’s Watching the Kids?

• have at least one trained child care worker, familiar with issues children with disabilities, chronic illness or other special needs may have

• the others can be volunteers, high school or college students, youth groups from churches, adult volunteers, etc.

• if you don’t have funding to pay them and they want to be paid, ask the parents that come to each chip in whatever they can afford

• the trained worker should be paid about $10/hour

Informal Support Groups:Who Are You?

• be sure to define the group before hand so you don’t run into problems later with people wanting to come that may not be appropriate

Example: a Teen Group needs to be specified as for kids with disabilities or for Sibling Teens or both

• the more generic the group, the more apt you are to get participants, i.e. Moms’ Group


Informal Support Groups:Getting the Word Out

• Advertise

– newsletters (paper & electronic)

• school, community organizations, churches, etc.

– therapy programs

– durable medical equipment agencies

– other service providers

– ask your Special Education Department at your local school district to send out a message through backpacks

– your school district’s website, campus marquees, etc.

– Local newspaper’s community events section

Informal Support Groups:

Good to Know . . .

• Be prepared to have low attendance, at least some of the time.

• Don’t be discouraged if it takes at least 6 months to get a group established - commit to at least that length of time.

• These groups also tend to fluctuate between high and low attendance.

• If you have a core group of parents who can commit to coming to each meeting, it will probably take off faster.

• People don’t want to be the only person there and if they come and there are only two people, they might not come back.

Mom’s Pampering Day

a great way to create a core group of moms!


Mom’s Pampering Day:What You Need

• Child care

• Volunteers to plan and organize

• Place to meet

• Ways to advertise

Mom’s Pampering Day:Child Care is the Key!

• hit up everyone you can think of

– Rotary Club, Churches or Church Groups, large retailers or restaurants, etc.

• ask them to fund 4 hours for moms – approximately $80.00 for the child care

• Tell them how much these moms need to be pampered

• Make sure you have at least two trained child care workers, familiar with issues children with disabilities, chronic illnessor other special needs may have

• The others can be volunteers, high school or college students, youth groups from churches, adult volunteers, etc.

• ask the moms that come to each chip in whatever they can afford to pay the trained worker.

Mom’s Pampering Day:Location, Location, Location …

Pick a meeting space that allows for child care

– Ideas

• local ECI program or therapy center is ideal

– they have toys and equipment for kids with special needs

– you might even be able to hire some of the workers as child care providers

• elementary campus in your school district

• local church


Mom’s Pampering Day: Oh, the Possibilities …

Call anyone you can think of that might provide servicesthe moms will enjoy

• Massage therapists or schools

– the students have to practice on clients - offer to be “guinea pigs”

– some therapists are willing to give massages away so they can build a clientele

• High school or community college cosmetology programs

– the students have to practice

• Mary Kay Cosmetics

– ask them to come do makeovers – they’ll come again to build their clientele

Pampering Possibilities, cont’d …

• Dance studios, martial arts

– ask for free demonstrations

• Cooking schools

– teach a new recipe

• Be creative and have fun!

• For the kids

– get someone to come with animal pals, puppets, craft ideas

– tap into the child development programs at the local high school.

Mom’s Pampering Day: Let’s Eat!

• Ask the moms to bring something for a potluck lunch

– You can give it a theme – coffee house, Mexican food, desserts, salad day, etc.

– This keeps the cost to a minimum


Equipment Closet

An excellent way to hook parents up with your group or with each other!

Equipment Closet: Supply & Demand

• parents who have too many diapers or formula usually don’t have room to store it and can’t wait to get rid of it

• parents without funding sources are desperate to cut the cost of diapers and formula

• also, when a child outgrows equipment, it’s a great feeling to pass it on to another kid who needs it when their parents can’t afford it

Equipment Closet: Who’s Eligible?

• decide up front who is eligible to receive equipment/supplies

• if you don’t, you may find yourself giving formula, diapers, or a piece of equipment to a parent that has Medicaid and can get them through that funding source

• as soon as you give the item to someone with a funding source, a parent without a funding source or insurance will call for those items!


Equipment Closet: Who’s Eligible? cont’d

• we made a simple rule that families with Medicaid, Medicaid Waiver programs, and sometimes insurance have to have a compelling reason why they need something before we give it to them unless it’s something so specialized that no one else could use it

Equipment Closet: What You Need

• location to store equipment and supplies (hospital, service provider who has extra space)


• contact phone number or email address

• log to keep track of requests and equipment


Equipment Closet … Where to Store It

• a space big enough to handle a couple of wheelchairs, a tumbleform chair, and a dozen bags of diapers at a minimum

• shelves are great but not essential

• see if your local therapy center, ECI center, or hospital might have some space to lend you


Equipment Closet: Who Ya Gonna Call?

• You’ll need a contact number

– someone who doesn’t mind being called at home

– or have it go directly to a voice mail somewhere

– email?

Equipment Closet: Getting the Word Out

• advertise to the clients of local therapy centers, ECI centers, service providers or hospitals, through their newsletters or bulletin boards

• they’ll send you lots of parents, both to donate and pick up equipment

• get your local newspaper to do an article on it for you. If possible, advertise what equipment/supplies you have available

Equipment Closet: Keeping Track

• it’s a good idea to keep track of the equipment/ supplies

• all the work can be done from home on your computer or just on a chart

• create a log (TxP2P has one that we will share) that shows the name of the equipment, who donated it, when it arrived, who it was given to, and when it was given out

• when someone calls for equipment, you can just check the list and if you have it, arrange to meet them at the closet


Equipment Closet: Hints

• Ask parents to keep large items (hospital beds, furniture, wheelchairs) at home until you can find a parent that needs the item.

• Ask the parent that needs the item to arrange to pick it up from the family.

Listserv

A very simple way to build support within a community!

Listserv: What You Need

• volunteers to set up a Yahoo Group and moderate it

• access to a computer and the internet

• parents’ email addresses

• at least 10 parents to get started

– less than 10 will make for a very slow listserv


Listserv: What Kind of Group?

• it’s simple to set up a group at Yahoo.com

• decide if you want

– it open to the public (anyone can join)

– a closed group (members must be invited)

• typically, closed is best – then you really know that all the people posting messages are parents of children with special health care needs

Listserv: To Moderate or Not

• The other major decision is whether to moderate the group or not

– moderating means that you or another volunteer must read all the emails before they get posted to the group

• It’s really not that difficult or time consuming to moderate, but it can save the group from being subjected to negative or inappropriate emails

• If you moderate, you have the option to

– edit a message

– delete it, or

– reject it and tell the sender why you are rejecting it so they can make changes, etc.

Listserv: A Great Place for Parents to …

• post new resources they’ve found, such as camps or doctors or therapy centers

• ask questions

– Which doctors or dentists in town take Medicaid?

– Where can I get piano lessons for my daughter with special needs?

• share ways to advocate for their child at schools, child care centers, etc.

• “vent” within a safe environment and receive support


More Complicated Forms of Community Building

Respite Program

Respite Program: What You Need

• money to pay at least two respite providers


• place to meet

• supplies for kids


Respite Program: Funding

• guarantee that you have the funding for at least 6 months

– approximately $500 for a once a month program will do it

• child care workers

• food, snacks for kids

– it’s very sad for parents to lose respite care after it just got started

Respite Program:Location, Location, Location

• ask someone to donate space you can use

– church, child care center, local ECI center, etc.

– make sure it is large enough and appropriate for children

– you need toys and a TV/VCR to entertain the kids

– a playscape is great but not essential

Respite Program: Staff

• make sure you have at least two trained child care workers, familiar with issues children with disabilities, chronic illness or other special needs may have


– service projects, community service hours, etc.

• if you don’t have funding, think about charging the parents – you can have it on a sliding fee scale since most parents don’t have extra money for this.


Respite Program: Staff, cont’d

• it’s a good idea to have a volunteer stay around for the event – in case the workers need an extra hand or if there is an emergency

• give the parents a phone number they can call if they are stuck in traffic and are late picking up their child

Respite Program: Who’s Eligible?

• decide who can access the respite program– there are several ways to organize this

• first come, first serve

• start a list – the first ones on it get to come and then they go to the bottom of the list and get called the next time their name comes up

• take the same families each month.

– other questions• Do you take parents who receive funding for respite care through a Medicaid Waiver Program?

• Do you take kids that need a medical procedure done, like feeding pump, g-tube, oxygen, take medication?

Respite Program: Documentation

• have each parent complete a document that explains their child’s abilities and needs

• each parent should also sign a liability document before leaving their child

• you can create your own forms or use forms from another group

– TxP2P has examples of these forms

• make sure you have emergency contact information for each parent

– preferably a cell phone they are carrying with them.


Respite Program: Scheduling

so that parents can count on the schedule, schedule the event on a monthly or weekly basis

– same day

– same time

– same location

– same time each month

Emotional Support Groups

Emotional Support Groups:What You Need

• two co-facilitators

– training or mentoring for co-facilitators

• space for meeting

• child care, if possible

– space

– funding

• copying for handouts



Emotional Support Groups: Good to Know

emotional support groups need to meet on a weekly basis for a minimum of 6 weeks

– this will allow the group time to come together as a unit that can help each other

– it takes a couple of meetings for people to start trusting the facilitators and each other

Emotional Support Groups: Facilitators

• you will need two co-facilitators– one will be leading the group while the other one listens

and watches parents’ reactions

– one will hear something that the other one might not and they can help each other out of touchy situations at times

– with two facilitators, most parents are bound to connect to one of them.

• TxP2P has a curriculum you can use for these meetings and will be glad to coach you through your first attempts

Emotional Support Groups:Location, Location, Location

pick a meeting space that allows for child care

– your local ECI program or therapy center is ideal because they have toys and equipment for kids with disabilities, chronic illness and other special needs

• you might even be able to hire some of the workers as child care providers

– you also want the meeting space to be comfortable for the parents and away from the child care noises

– parents won’t be comfortable to share if they are worried about their child.


Emotional Support Groups: Child Care

• make sure you have at least two trained child care workers, familiar with issues children with disabilities, chronic illness or other special needs may have


• if you don’t have funding, think about charging the parents– you can have it on a sliding fee scale since most

parents don’t have extra money for this

Emotional Support Groups: Advertising

• ask a local copy shop or a service provider to use their copier to print handouts for the group.

• advertise in newsletters, with service providers, or with flyers at your child’s school.

Emotional Support Groups: Hints

• be prepared for low attendance

• talking about emotions is not easy and most parents will avoid it

• you have to be consistent and show up even if no one else does

• these groups need to be small anyway so everyone will have time to talk


Newsletters:

a great way to pull a community of parents together

Newsletters: What You Need

• volunteers to write, edit, copy, and mail the newsletter

• access to a computer

• mailing list

• funding or donations of paper and stamps (bulk mail over 200 with permit)

Newsletters: Good to Know

• Newsletters can announce events or can share information or both

• Start simple by sharing a story or information about the services in your community

• Or just announce group meetings

• The best way to start one is to have a volunteer who is already interested in creating a newsletter

• They are a lot of work for someone who

– has to be talked into doing it

– isn’t good on the computer

– isn’t interested in creating one in the first place


Newsletters: Funding

• some groups collect dues from members of the group and use the money for the costs of the newsletter

– however, you then have to send out reminders for people to pay their dues and that takes more stamps, paper, and follow-up

• the best way is to get a printer or service provider (Durable Medical Equipment Company, therapy center, etc.) to underwrite the costs or let you use their copier in exchange for being named as the sponsor of the newsletter

• you can also go to an office supply store and ask for donations of paper

Information &

Referral

I & R (Information & Referrals): What You Need

• a phone and space for a desk or table to store your resources

• volunteers to answer the phone or call parents back

• Resource Directory


I & R: 211

• by dialing “211” (like 911), you are attached to an I & R center for your area

– they have access to the latest information about things like

• who can help pay an electric bill

• where you find the local dog shelter

• many calls looking for information can be forwarded to 211

– you then only have to focus on resources for families of children with disabilities, chronic illness and special health care needs.

I & R: Good to Know

• you can do this out of your home but be prepared to have your phone ring all the time

• it’s best to have a phone with an answering machine at a separate location so more than one volunteer can share the responsibility

• advertise through flyers at service providers and your child’s school

Resource List/Directory


Resource List/Directory: Good to Know

• include therapy centers, ECI programs, parent groups, school programs or parent liaisons, etc.

• make sure to keep up with address and phone number changes

• TxP2P has a statewide resource list and some local lists and areworking on more all the time

– You can also look at our Website Resource Directory at www.txp2p.org for services available by each county in Texas

– If you create a resource list, we would love to have a copy so we can add it to our Resource Directory!

• when a parent calls and you don’t have an answer, take the opportunity to search for what they need and add to your resources – that helps both of you

• asking parents to share their favorite resources at a meeting isa great way to get started

Resource List/Directory: Good to Know

right now in Texas, the most important resources parents can hear about are the Medicaid Waiver Programs

– these programs are based on child’s income (not the parents’) in order for them to qualify for Medicaid and receive additional services that will allow a child to remain in the community as opposed to a nursing home or institution

– the programs provide funding for a personal attendant, respite, therapies, adaptive aids, home and vehicle modifications, etc.

– they all have waiting lists but it is important to get on it now!

– the legislature may freeze these lists and then it’s too late to get on them

– see TxP2P’s Statewide Resource Lists for more information

Resource List/Directory: Hints

make sure parents don’t wait too long to hear back from you

– remember how it feels to call someone and then wait a week to hear from them?

– call within 48 hours if possible, even if only to say you don’t have the information but will look for it


Lending Library

Lending Library: What You Need

• space to house the library

• books, videos, articles, etc.

• volunteers to organize and maintain library

• computer with internet access if possible


Lending Library: Funding

• many parents, educators, therapists, etc., buy books and videos and then file them away, never to use them again

• a library is a great way to utilize all that information

• ask folks to donate the items they won’t use again so others can benefit from their research and resources


Lending Library: Funding

• ask your local book store to donate some new books or some funding to buy books

– some books stores offer discounts to groups building and maintaining libraries (“teacher” or “librarian” discounts)

• Barnes & Noble – 20%

• Half-Price Books – 10%

• it’s easier now to get a donated computer than it used to be – most people upgrade and don’t know what to do with the old one

– It may not be fast, but for parents without internet access, it will be wonderful!

Lending Library:Location, Location, Location

• ask your local ECI program, therapy center or even your library to donate a space for a resource library

– they’ll make “points” with the parents by having a specialized library available but don’t have to invest staff time ($$) to do the work themselves

Lending Library: Getting the Word Out

• Advertise

– newsletters (paper & electronic)• school, community organizations, churches, etc.

– therapy programs

– durable medical equipment agencies

– other service providers

– ask your Special Education Department at your local school district to send out a message through backpacks

– your school district’s website, campus marquees, etc.

– local newspaper’s community events section


Crisis Assistance Funds

Crisis Assistance Funds: What You Need

• nonprofit status or a nonprofit organization to help with accounting

• funding

• guidelines

• volunteers to oversee and grant requests


Crisis Assistance Funds: Tax Matters

• you can maintain a crisis fund without a nonprofit status but the donations made to it will not be tax deductible

• most donors want the tax deduction

• you can partner with a nonprofit who is also interested in helping parents with the sometimes staggering costs they face when raising a child with a disability, chronic illness, or special health care needs


Crisis Assistance Funds: Funding Sources

• have a good idea of where you think the bulk of the funding will come from before you start the fund

• funds like this have been started when a child dies or gets injured or from individuals who have a child with a disability and also happen to have a Family Foundation or access to one

• be sure to acknowledge the gift with a thank you letter and in a newsletter, if you have one

Crisis Assistance Funds:Decisions, Decisions, Decisions

How much funding you will give– the same to each

parent

– an amount based on their income

– sliding fee based on income

– based on the need, etc.

What you will give funding for– disability related equipment

– diapers

– formula

– respite

– utility assistance

– groceries

– medical supplies

– medical expenses

– conference registrations

– travel for medical appointments

– camp

– skates for camp, etc.

– some requests will surprise you –trust the parents to know what their critical needs are and don’t judge

Crisis Assistance Funds: More Decisions

• to whom will you give funding

– anyone who asks

– only those on your mailing list

– only those without a funding source like insurance or Medicaid

– only those without a job

– within defined financial requirements, etc.

• some programs determine layers of funding

– if we have $5,000, we’ll fund anything

– when it gets down to $3,000, we’ll only fund respite and medical supplies, etc.


Crisis Assistance Funds: Good to Know

• the more specific you are in your guidelines, the easier it is when it comes to deciding who gets the limited funding

• no matter how much funding you have, it will never be enough!!

• understand that some parents will not use the money the way they said they would

– this is a reality!

– don’t judge the whole program by a few parents – if ten parents got the funding and used it appropriately and one didn’t, you still helped 10 parents and their children.

Crisis Assistance Funds:Getting the Word Out

Don’t worry about advertising! Parents will find you if you have a crisis fund!

Very complicated forms of Community Building


Parent to Parent Matching: What You Need

• Staff or very dedicated volunteers

• Parents willing to support new parents

• “Supporting Parent Volunteers” training

– Location, child care, and refreshments

• Space to coordinate matching and maintain all the materials you’ll need

• Phone

• computer (optional)

• System to make parent matches and follow-up on them

Parent to Parent Matching:Help from TxP2P

Part of Texas Parent to Parent’s mission is to train parent groups that are interested in

providing one-on-one matching to parents based on specific disabilities and/or issues related to

disabilities or special health care needs.

• you recruit 6 to 10 parents, find a location for a training, and child care workers to take care of the children

• TxP2P will come do the training and pay the expenses

• TxP2P will then help you set up a matching system that will work for you and will help you do your next training

Parent to Parent Matching:Training Details

• trainings are usually held on a Saturday from 9:00 a.m. – 4:00 p.m.

• we will provide you with a training manual, all the handouts, and a blank database if you want one

• this is free of charge to your group with the stipulation that we also get to use the volunteers (if they are willing) we trained with you to support parents in other parts of the state

• we will provide them with a calling card number to contact parents via long distance telephone


Family Support Cooperative

Family Support Cooperative:What You Need

(weekly or monthly meetings)

• Staff or dedicated volunteers to plan, organize, and facilitate the meetings

• Funding for pizza & child care

• Place to have meetings with appropriate space for child care

• Presenters willing to present for free

• Evaluations tools and organization method for meeting nights

• Ways to advertise

Family Support Cooperative: Hints

• this is a very time-intensive activity but can be very successful in creating a community of parents

• see the booklet, “How to Start a Family Support Cooperative” for more information


Special Education Assistance

Special Education Assistance:What You Need

• staff of dedicated volunteers who are very knowledgeable about Special Education (IDEA) and §504 law

• training for ARD Support Volunteers

– a knowledgeable trainer

– location for training

• space with phone, computer, and internet access from which to make matches and maintain materials

• system to match and follow-up ARD Support matches

Special Education Assistance: Good to Know

This is a fairly complicated one-on-one matching program. While we have done it in the past at a local program, TxP2P has not attempted to integrate this program into our services yet.


Jeanine Pinner

Training & Outreach Coordinator


[email protected]

512-217-3558

THANK YOU!


3710 Cedar Street, Box 12

Austin, Texas 78705

www.txp2p.org

toll-free 866-896-6001 local 512-458-8600

Fax 512-451-3110

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