Establishing and maintaining parent‐support groups

This article was downloaded by: [Joh Gutenberg Universitaet]On: 18 October 2014, At: 06:39Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number:1072954 Registered office: Mortimer House, 37-41 Mortimer Street,London W1T 3JH, UK

Early Child Developmentand CarePublication details, including instructions forauthors and subscription information:http://www.tandfonline.com/loi/gecd20

Establishing andmaintaining parent‐supportgroupsMolly M. Gage a & Phillip M. Wishon ba The Mile High Down Syndrome Association ,Boulder, Coloradob The University of Northern Colorado ,Greeley, ColoradoPublished online: 07 Jul 2006.

To cite this article: Molly M. Gage & Phillip M. Wishon (1988) Establishing andmaintaining parent‐support groups, Early Child Development and Care, 36:1,49-63, DOI: 10.1080/0300443880360104

To link to this article: http://dx.doi.org/10.1080/0300443880360104

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of allthe information (the “Content”) contained in the publications on ourplatform. However, Taylor & Francis, our agents, and our licensorsmake no representations or warranties whatsoever as to the accuracy,completeness, or suitability for any purpose of the Content. Anyopinions and views expressed in this publication are the opinions andviews of the authors, and are not the views of or endorsed by Taylor& Francis. The accuracy of the Content should not be relied upon andshould be independently verified with primary sources of information.Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities

http://www.tandfonline.com/loi/gecd20

http://www.tandfonline.com/action/showCitFormats?doi=10.1080/0300443880360104

http://dx.doi.org/10.1080/0300443880360104

whatsoever or howsoever caused arising directly or indirectly inconnection with, in relation to or arising out of the use of the Content.

This article may be used for research, teaching, and private studypurposes. Any substantial or systematic reproduction, redistribution,reselling, loan, sub-licensing, systematic supply, or distribution in anyform to anyone is expressly forbidden. Terms & Conditions of accessand use can be found at http://www.tandfonline.com/page/terms-and-conditions

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4

http://www.tandfonline.com/page/terms-and-conditions

http://www.tandfonline.com/page/terms-and-conditions

Early Child Development and Care,1988, Vol. 36, pp. 49-63Photocopying permitted by licence onlyReprints available directly from the publisher

© 1988 Gordon and BreachScience Publishers, Inc.Printed in Great Britain

Establishing and maintaining parent-support groups

MOLLY M. GAGEThe Mile High Down Syndrome Association, Boulder, Colorado

PHILLIP M. WISHONThe University of Northern Colorado, Greeley, Colorado

(Received 20 November, 1987)

The birth of a handicapped child into a family provokes in varyingdegrees, a sense of anxiety, a sense of despair, and a sense ofhelplessness. In many communities, parent-support groups have beenestablished in order to help families of handicapped children deal withthe many challenges that confront them. Drawing upon the experienceof establishing the Mile High Down Syndrome Association in Coloradoas a model, the importance of parent-support groups is discussed, andissues related to establishing and maintaining a parent-support groupare examined.

KEY WORDS: Parent-Support Groups, Establishing, Maintaining

INTRODUCTION

The collective sadness seemed to grow into strength and acceptance.(Broszat, 1986, p. 12)

IN many ways the birth of a handicapped child into a family presentsa major challenge. There are feelings of anger, resentment, guilt,inadequacy, sadness mixed with love, and concern for the youngchild. Parents and siblings must learn to understand the special needsof their child and how best to meet those needs. They must also learnways to work within the community to provide a full life for theirchild. Professional caregivers can help parents with the challenges ofraising a special child, but often it is other parents of handicappedchildren who can best provide needed support.

In her exploration of the feelings of parents of handicappedchildren and how they cope with the challenges of their parentingrole, Simons (1985) suggests that the initial reaction of parents is

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4

50 M.M. GAGE AND P.M. WISHON

usually shock and panic. "Weighed down by their feelings, parentsbecome incapable of making decisions. They might know that help isout there, but they are unable to pick up the phone to ask for it"(p. 7). A parent-support group can help parents move beyond theirinitial shock. Most families find their greatest support comes fromother, similar families. "With everyone else, you have to be sopositive. But with them you can share your worst fears, even youranger and frustrations, and you know they'll understand" (Simons,1985, p. 16).

Overview of the Purposes of Parent-Support Groups

A support group can be therapy, respite, and a source of great friendship. But mostly,it can be what all humans really need . . . support. (Braley, 1986, p. 13)

Since the early 1980s there has been a major movement toward thedevelopment of family support programs. These programs take abroad approach to parent support by focusing on the whole picture offamily life. According to Powell (1986), many family supportprograms emphasize the development of support systems for familiesrather than intervening to change what some might perceive asdeficits in the family. Typically, these programs are community-based and rely on local financial resources and volunteers.

Most parent-support groups operate on limited budgets with littleor no government funding, enabling them to remain viable despiteincreasing financial restraints on public and private social services.Parent support groups serve clients who have a wide array ofconcerns, and may provide long-term support and a sense ofbelonging to an extent that is not often found in public and privatesocial services agencies (Toseland & Hacker, 1985). As a method ofhelping, the groups cost little and give their members a chance toprovide as well as to receive assistance. Members have a chance tomeet in an atmosphere that encourages deep and personal sharing ofconcerns.

By providing assistance to parents of special needs children,parent-support groups help to facilitate growth for all members of thefamily. This growth provides a basis on which family members cancombine to build their best level of optimal responsiveness. The majorareas of assistance generated by most parent-support groups include:

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4

PARENT-SUPPORT GROUPS 51

1. providing emotional and psychological support;2. offering opportunities for families to socialize;3. providing information about community resources, educa-

tional opportunities, legal rights, etc.4. serving as activists and advocates on behalf of special needs

children;5. improving community attitudes toward children with handi-

caps;6. supporting research about various handicapping conditions.

A principal area of assistance provided by parent-support groups issocial support. Cobb (1976) describes social support as informationleading the parents to believe that they are:

1. cared for and loved2. esteemed and valued3. part of a network of mutual communication and obligation.

In Cobb's view, goods and services are not as central to the idea ofsocial support as information and the extent to which relational needsare met. These supports are usually derived from family, friends, andindividuals in the helping professions.

Parent-Support Groups as a "Sustaining Presence"

You see, as much as I love my friends with non-handicapped children, it's hard forthem to understand why I choke up when I see two little girls playing jacks. Theysimply can't identify with the frustration of therapy every day of the week, or how itfeels to untie and tie down a wheelchair sometimes ten times a day. (Braley, 1986,P- 13)

Support groups for parents can be most sensitively appreciated interms of their providing a "sustaining presence." The metaphor of asustaining presence addresses a number of issues which confrontfamilies of special needs children, including:

1. concern for provision of technical competence (medical,therapeutic, etc.)

2. awareness of value-laden concomitants3. shared objectives as a basis for relationships4. intent to struggle against what can be (in many degrees at least)

overcome5. instruction about the nature of the human condition6. behavior that is protective and nurturing (Shelp, 1986).

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


According to Shelp, the contribution of the image of sustainingpresence (referred to in a similar context as "enduring inter-personalities" by Gallagher et al., 1983) is in its ability to representthe unique circumstances and associated requirements of individualcases. The sustaining presence of parent-support groups can power-fully state that the child and parents are valued by others. Out of thisaffirmation, the parents may be better able to exercise the burden ofmaking decisions regarding the care of their child. The integrity withwhich they do so can be enhanced by the support of other informed,loyal, and caring parents.

Starting a Parent-Support Group: Needs Assessment

The first step in an effort to locate parents with special needs children,with the idea of starting a support group, is to formulate a needsassessment questionnaire to see if interest in a group exists in one'sgeographic area. When one of the authors began a parent-supportgroup, the questionnaire that was developed asked parents to expressopinions about:

1. functions such a group might perform2. topics of interest for informational meetings3. ideal group size4. meeting time and place5. how they might like to become involved in organizing the group.

The next step was to distribute these questionnaires to areaparents. It proved difficult to obtain address lists of parents because ofthe issue of confidentiality. We were fortunate to have the help of theBoulder County (Colorado) Board for Developmental Disabilities—a local agency willing to disseminate the questionnaire and coverletter to various agencies that provide services to children with Downsyndrome. Each agency was asked to share the printed informationwith their clients. Within two months we had received about thirtyresponses—mostly enthusiastic about the idea of a group. From thisbeginning six years ago has emerged the Mile High (Colorado) DownSyndrome Association which serves over 350 members.

Needs assessment should be an ongoing project for any parentgroup. As children grow, the needs of families can change. Changingcommunity conditions can also create new challenges for families. Asuccessful parent group will be responsive to the changing needs of itsmembers. The Mile High Down Syndrome Association has under-taken several formal needs assessments since the initial one in

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


January, 1981. These assessments have been conducted by telephonesurvey, mail-in questionnaires, and special "speak-out" meetings.

The Mile High Down Syndrome Association organizes monthlyinformational meetings on research, educational, and legislativetopics. It plans social events for parents and children, and it functionsas an information source about Down syndrome for the community-at-large. It is part of a national and international coalition of similargroups which works to improve the lives of individuals with Downsyndrome. Its most important role, however, may be as an emotionalsupport system for many families of children with special needs.

Logistics of Starting a Parent-Support Group

Parent-support groups usually function best when they are run byparents rather than professionals. Parents know their own needs bestand also what direction a group must take to fulfill those needs.

Mile High Down Syndrome Association began with thirty positiveresponses from parents who decided to unite and plan an organ-izational meeting. The Boulder County Board for DevelopmentalDisabilities was again willing to disseminate meeting announce-ments. Announcements were mailed to all families from whomresponses had been received on the needs assessment questionnaire aswell as to all the social service agencies which had been contactedpreviously. The Boulder County Board for Developmental Dis-abilities was also helpful in securing a meeting place in a centrallocation at no charge. The agenda for the first meeting included thefollowing items:

1. A summary of the questionnaire results.2. Announcements of meetings and publications of interest.3. Request for volunteers to serve on the following committees:

a. A steering committee which would handle the leadership roleuntil officers could be elected at a later date.

b. A research committee which would maintain a reference fileof pertinent articles about Down syndrome.

c. A committee responsible for counseling parents of new-bornchildren with Down syndrome.

d. A legislative committee that would be responsible for inform-ing the membership of important legislative developments.

4. Time for refreshments and socializing.

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


The major purpose of that first meeting in April of 1981 was togenerate enthusiasm for the idea of forming a support group. This wasaccomplished. Volunteers were recruited for each committee, andthese committees began to work on their respective tasks during thesucceeding weeks.

We were fortunate to have a lawyer present at our first meetingwho was familiar with the rules for incorporation in the state ofColorado. He was able to help us become officially incorporated inthe fall following our first meeting. The organization was grantednon-profit status by the Internal Revenue Service one year later—animportant accomplishment for fund raising purposes.

A board of directors and officers for the organization were notelected until the September meeting—allowing the members time toget acquainted. Currently the organization elects board members inthe fall. Officers are chosen from the board members, and theytypically serve two-year terms. The board of directors meets monthlyto consider various issues and to set goals for the organization.Business concerns of the organization are typically dealt with atboard meetings rather than general membership meetings.

A system of committees continues to work-well for the group. Theseven committees which are currently active include:

1. Parent Visitation which is responsible for outreach to parents ofnewborns with Down syndrome.

2. Education which plans monthly informational meetings and fillsrequests for speakers.

3. Conference which plans periodic day-long conferences on specialtopics.

4. Social Affairs which plans social functions for the group.5. Legislative Affairs which keeps members informed of legislative

developments.6. Public Relations which presents the story of Down syndrome to

the public.7. Fund Raising which works to provide the funds necessary for the

organization to function.

Membership Recruitment

Beginning with about thirty members in April, 1981, the Mile HighDown Syndrome Association had 139 members two years later. It

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


now has over 350 members on its mailing list. Locating potentialmembers and encouraging them to join the organization needs to be aprime concern of any effective support group.

Good public relations efforts are important in informing thecommunity about the group and its purposes. At various times duringits existence, the Mile High Down Syndrome Association has used thefollowing methods for publicizing its mission:

1. Announcements of meetings were placed in local newspapers.2. A descriptive brochure was developed and distributed to area

hospitals, pediatricians, schools, and libraries.3. A telephone line for the organization was installed.4. A part-time executive secretary was hired to respond to requests

for information about the organization.5. An attractive poster was printed and disseminated to celebrate

Down Syndrome Month in October, 1985.6. Arrangements were made with a local grocery store chain to

print grocery bags which publicized the organization inOctober, 1985 and 1986.

7. Members of the organization have been invited to appear ontelevision or speak on radio about Down syndrome.

8. A daughter of one of the members was chosen to be poster childfor the March of Dimes in ig86. She made many publicappearances throughout the year'helping to inform manypeople about Down syndrome.

9. The organization has sponsored a number of conferences ofinterest to parents and professionals.

All of these methods were useful in educating the public aboutDown syndrome and about the work of the parent-support group.Most new members, however, became acquainted with thesupport group through the efforts of the Parent VisitationCommittee. Most members of the organization feel strongly that avital reason for the group's existence is to provide a way for parentsof newborns with Down syndrome to meet other parents.

New Parent Visitations

I remember the first person I talked to who also had a Down child. She came to visitme shortly after I brought Carrie home from the hospital. She was so helpful to me—just to see that you didn't die or fall apart just because your child has Downsyndrome. She still enjoyed life. I wanted to do that for other people so I started

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


visiting other new parents of Down children. I've seen a lot of them. I don'tremember most of them, but I'll tell you, they remember you. (Simons, 1985)

Providing support to parents of newborns With Down syndrome isone of the most important functions of the Mile High DownSyndrome Association. It is helpful to reach out to new parents. Someof the tasks carried out by the Parent Visitation Committee include:

1. Assembling and distributing to parents a packet containingbooks and pamphlets about Down syndrome, informationabout the organization, and a bibliography of resources aboutDown syndrome.

2. Recruiting group members who are interested in calling on newparents.

3. Devising and implementing a training program for parentvisitors.

4. Maintaining contact with hospitals to share the importance ofthe parent visitation program. The committee conducts annualworkshops in each area hospital to re-emphasize theimportance of early parent-to-parent support.

5. Assigning parent visitors to particular area hospitals to visit newparents and to encourage hospital staff to contact them when aDown syndrome birth occurs. These parent visitors also file aninformation sheet so that follow-up contact can be made.

6. Making provisions for visiting grandparents and siblings ofchildren with Down syndrome.

The Mile High Down Syndrome Association depends on familyphysicians, obstetricians, nurses, and pediatric hospital staff to alertparents of newborn handicapped children to the existence of thep?.rent-support group. For this reason, maintaining open lines ofcommunication between the organization and professionals is veryimportant.

Other groups offer similar programs for providing support tofamilies of children who have recently been diagnosed with ahandicapping condition. The Pilot Parent Program in Omaha,Nebraska (Porter, 1978) trains "pilot" parents to support new parentswith frequent contacts, information and invitations to social activ-ities. Pilot parents "learn the principle of normalization: that ahandicapped person will learn and develop in optimal fashion if he istreated normally and is included in those activities appropriate to hisage group" (Porter, 1978, p. 6). In the Parent to Parent Program(Scott & Doyle, 1984), based in the Seattle, Washington, area,

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


potential helping parents undergo a training program which centerson small groups of parents sharing with each other and a facilitatortheir "stories" of how they learned how to deal with having ahandicapped family member. They also attend monthly supportmeetings while they are serving as helping parents.

Membership Services

The Mile High Down Syndrome Association offers the followingservices to its members:

1. Monthly informational meetings. These meetings may have anumber of different formats and focus on a variety of topics. Arecent annual report lists the following topics on the agenda:

January Multidisciplinary Clinic for People with Down SyndromeFebruary Wills, Trusts and Insurance for Handicapped CitizensMarch Educational Placement for Children with Special NeedsApril Physical Therapy and Speech TherapyJune Recreational Programs for Handicapped ChildrenSeptember Current Genetic Research

These meetings may often feature professionals who serve indi-viduals with Down syndrome. A popular meeting that has beenrepeated several times features a group of young adults with Downsyndrome who speak about growing up with their handicap.

2. Gatherings of smaller groups have occasionally been held inmembers' homes in a variety of geographical locations. Thesemeetings offer an opportunity for more intimate sharing than cantake place in a larger group.

3. Child care is offered at most monthly meetings to makeattendance easier for some parents.

4. A library has been established for use by members. It iscomprised of a collection of books and periodicals that are ofparticular interest to parents of children with Down syndrome.

5. Tape recordings are made of each informational meeting andthese are available for members to borrow.

6. Several purely social functions are planned throughout the year.Such gatherings permit entire families to get to know andunderstand each other better.

7. Material gathered at the annual convention of the NationalDown Syndrome Congress is made available to all members.

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


8. A special fathers group meets periodically for support anddiscussion as well as to plan outings with their children.

9. A membership list is maintained to help members stay in touch.10. Issued annually to the members is a report that includes a

statement of the objectives of the group, a report from each of thecommittee chairpersons, a statement from the group president, abrief history of the group, and a financial statement.

11. An office, telephone, and services of an executive secretary areavailable to any member who needs information.

12. A monthly newsletter is sent to each member. Information on thefollowing items is included in the newsletter:a. Announcements of future meetings.b. Articles about recent research findings.c. Information about important legislative developments.d. Reprints of interesting articles.e. A "Meet Our Members" feature.f. Book reviews.g. A "Question and Answers" column,h. A listing of new members.i. Other news of interest to parents and professionals.

13. A special edition newsletter comprised of summaries of workshoppresentations at the National Down Syndrome Congress con-ference is also sent to members once a year.

Relationship of Support Groups to Professionals

Most professionals, sympathetic as they may be, are not parents of ahandicapped child, and, consequently, cannot provide the same sortof support as another parent can. However, they bring specialtraining and expertise to help children with handicaps and theirfamilies. Ideally, professionals and parent-support groups shouldrespect each other and recognize the role that each plays in the life ofa family with a handicapped child.

The Mile High Down Syndrome Association has received muchencouragement as well as some resistance from professionals. Resist-ance has come largely from hospitals and doctors who are unwillingto refer new parents to the organization so that members of theParent Visitation Committee can contact them. Convincing hospitalpersonnel to cooperate in getting someone to talk to those parentsearly-on is an ongoing task. To make the task easier, members of the

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


Parent Visitation Committee conduct workshops for hospitalpersonnel to explain the work of the support group and to addressconcerns that doctors and nurses may have. Usually these concernscenter around the competency of visiting parents to counsel newparents who may be in a vulnerable emotional state.

Several mandatory training meetings for hospital visitors are heldeach year. These meetings are facilitated by a social worker or a nurseor some other professional who is able to train volunteers in effectiveways of relating to parents of newborns with Down syndrome.Listening skills are stressed and role playing is frequently used topractice skills.

A group of professionals serves as an advisory committee for theMile High Down Syndrome Association. This group of doctors,nurses, therapists, social workers, and educators is available to answerquestions that members of the group might have and to advise theorganization on its various projects. This professional alliance is animportant dimension in the successful functioning of the group.

From time to time, the Mile High Down Syndrome Association hasalso had contact with professionals who were conducting research forwhich they needed research subjects with Down syndrome. Theorganization provided these professionals with easy access to a pool ofpossible subjects. For reasons of confidentiality, the mailing list of theorganization is not generally distributed, but an announcement of aresearch project needing subjects can be placed in the newsletter. Theorganization usually encourages whatever research might be takingplace in the field.

Parents and professionals share the common goal of insuring thebest life possible for each child with a handicapping condition. It isimportant that they find ways to work together to achieve this goal.Open communication between the support group and the profes-sionals in the field is crucial in providing maximum benefit to familiesand their handicapped children.

Sources of Funding

In order for a parent-support group to provide services to its membersand to the rest of the community, funds must be found to support itswork. The Mile High Down Syndrome Association has depended ona number of funding sources during its existence. Various businessorganizations (generally those with close ties to members) have been

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


especially helpful in fund raising and in donating supplies andservices. One thing is certain—as the scope of the organization'soperations broaden, financial needs continue to escalate.

During the early days of the group's existence, printing andmailing costs for the newsletter were the major expenses. A $10.00membership fee was charged to cover these costs, and this wasincreased to $25.00 three years later. The monthly newsletter alsoincludes a membership application with a request for dues andcontributions. For this group, membership dues comprised 11.8% ofthe revenue in 1985. In addition to paying dues, members areencouraged to donate to the organization as they are able. Con-tributions accounted for about 27.9% of the revenue in 1985.Memorial contributions are another major source of revenue andaccounted for about 18.8% of the revenue in 1985.

Donations of time and expertise have also been vital to thesuccessful functioning of the group. For example, help with photo-graphy, layout and design, as well as printing, helped to keep the costof producing the organization's brochures to a minimum.

One particular fund-raising effort is of note. A teenage boy who hasa younger brother with Down syndrome organized his church youthgroup in a Rock-a-Thon. Members collected pledges for the numberof hours they would spend rocking in a rocking chair. The entireproceeds from the venture ($i>359-55) were donated to the parent-support group.

As heart-warming as such efforts are, it is difficult to operate theorganization on such unpredictable funding sources. It has been thehope, instead, to find a more adequate and dependable way togenerate needed funds. To a large extent, the quality of services thatcan be provided by the support group depends on the amount offunding that can be generated. The search for creative ways offunding the work that the group would like to do never ends; and thecompetition for limited resources continues to escalate.

Alliances With Other Organizations

When thinking about starting a parent-support group, one mustconsider carefully whether the group is to be independent or part of alarger umbrella group such as the Association for Retarded Citizens.Parent groups function successfully in both situations. Independence

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


offers the group the opportunity to chart its own course withoutneeding to fit into the priorities of a larger organization. On the otherhand, going it alone means that funding and other support servicesare not available from a larger organization.

After our local group was established, one of the first priorities wasto affiliate with the National Down Syndrome Congress. This groupserves the needs of people with Down syndrome on a national level. Itpublishes a monthly newsletter; plans an annual convention withworkshops and speakers who are experts in the field of Downsyndrome; lobbies for laws that benefit people with Down syndrome;and serves as an information clearinghouse for research on Downsyndrome. It also offers help to local groups in working moreeffectively for better lives for those with Down syndrome and theirfamilies.

The Mile High Down Syndrome also has had close ties with theAssociation for Retarded Citizens in Colorado. This organizationprovided meeting space, secretarial services, and telephone and mailservices during the first years. That early support was very valuable tothe parent-support group, and in return, members are urged to jointhe local ARC and support its advocacy efforts. Furthermore,speakers from the ARC have often been invited to speak at monthlymeetings.

The Mile High Down Syndrome Association has also maintainedclose contact with various adoption agencies in the area. In an effortto find homes for all children with Down syndrome available foradoption, descriptions of waiting children are published in Down'sUpdate, the monthly newsletter.

For the past three years, the organization has developed a workingrelationship with the Colorado Special Olympics. Together, thesetwo organizations sponsor the annual Governor's Cup golf tourna-ment—an event that has become a major fund raising effort for bothgroups.

Mile High Down Syndrome Association functions as an inde-pendent organization, but it benefits immensely from its allianceswith other organizations that have similar goals. The National DownSyndrome Congress, the Association for Retarded Citizens, SpecialOlympics, and the various adoption agencies share a commonconcern for the well-being of people with handicaps. It is appropriateand fruitful for these groups to work together on projects that willfurther their common goals.

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


On-going Concerns

There are severalissues that offer continuing challenges to a parent-support group. One of these issues is membership recruitment—theorganization must find ways to reach out to new members and toretain the commitment of established members. Parents of childrenunder five years of age seem to feel the greatest need for a supportgroup, but as their children grow older, they become less involved.An organization can be content to be a support group for familieswith young children with handicaps, or it can broaden its goals andbecome more responsive to the needs of families with older children aswell. In many instances, however, families of older handicappedchildren have found ways to adjust to the demands of having ahandicapped child. They may feel less need for information and thekind of emotional support required originally.

Another major issue of importance to the group is leadershiprecruitment. It is not always easy to find individuals willing to assumeleadership roles. Newer members do not always feel the samecommitment to the group as those who were involved in originatingthe group. One way to enlist new leaders is to ask new members toundertake a job that does not require a large commitment of time atfirst. If they are comfortable with this, .they might later accept aposition as committee chair or a leadership role on the board ofdirectors. The important thing is to convey to new members that theorganization needs their commitment as much as they might need thesupport of the organization. Maintaining active committees whichoffer satisfying ways for members to become involved is one way thatthe group could recruit new leadership. Greater involvement in thegroup may actually help a new parent cope more effectively with thechallenges of having a handicapped child in the family.

The birth of a handicapped child into a family often causes crisisand deep pain. To help heal the hurt, it is often helpful to be withother families who are living with the same sorts of challenges. Withthe help of many other dedicated people, a parent-support group canbecome an organization that helps to make the lives of people withhandicaps and their families fuller and happier.

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4


References

Braley, D. (1986, July). Mothers of challenged children. The Dove Tale. Longmont,Colorado: The Association for Retarded Citizens in Boulder County.

Broszat, J. (1986, July). The "old moms" group. The Dove Tale. Longmont,Colorado: The Association for Retarded Citizens in Boulder County.

Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic Medicine, 38,5.

Gallagher, J.J., Beckman, P. and Cross, A.H. (1983, September). Families ofhandicapped children: Sources of stress and its amelioration. ExceptionalChildren, 50, 1.

Porter, F. (1978). The pilot parent program: A design for developing a program for parents ofhandicapped children. Omaha, Nebraska: Greater Omaha Association forRetarded Citizens.

Powell, D.R. (1986, March). Parent education and support programs. YoungChildren, 41 , 3.

Scott, S. and Doyle, P. (1984, February). Parent-to-parent support. The ExceptionalParent, 14, 1.

Shelp, E.E. (1986). Born to die? Deciding the fate of critically ill newborns. New York: TheFree Press.

Simons, R. (1985). After the tears. Denver, Colorado: Children's Museum of Denver.Toseland, R.W. and Hacker, L. (1985, May-June). Social workers' use of self-help

groups as a resource for clients. Social Work, 30, 3.

Dow

nloa

ded

by [

Joh

Gut

enbe

rg U

nive

rsita

et]

at 0

6:39

18

Oct

ober

201

4

Documents

Establishing and maintaining parent‐support groups