Grandparenting Children with Disabilities

377 Pages·2020·3.981 MB·English

by  Madonna Harrington Meyer, Ynesse Abdul-Malak

Madonna Harrington Meyer
Ynesse Abdul-Malak
Grandparenting
Children
with
Disabilities
Grandparenting Children with Disabilities
(cid:129)
Madonna Harrington Meyer Ynesse Abdul-Malak
Grandparenting Children
with Disabilities
MadonnaHarringtonMeyer YnesseAbdul-Malak
DepartmentofSociology ColgateUniversity
SyracuseUniversity Hamilton,NY,USA
Syracuse,NY,USA
ISBN978-3-030-39054-9 ISBN978-3-030-39055-6 (eBook)
https://doi.org/10.1007/978-3-030-39055-6
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Whenhegetstolaughing,thatisthesweetestsoundtomeinthewholewideworld.
And we will laugh sometimes for an hour, and I sometimes don’t even remember
whatwe’relaughingat.
We don’t go out as much because we live in an apartment building and we have
stairs,andbecausethere’snorampsandthatapartmentcomplexdoesn’twanttoput
in ramps, and because we can’t afford to put in ramps...But, it’s his equipment is
really heavy, and I have to be the one to carry his equipment down the steps
...They’reveryheavyandIjustcan’tdoitbymyself.
Connie,age57,andAndy,agetwoandone-half,whohascerebralpalsy
For Ellen, Maureen, Sam, Tyreke, and Jeff
MHM
For Leila, Ziad, and Sami
YAM
Acknowledgements
Weareenormouslygratefultoeachofthe50grandparentswhotooktimeoutoftheir
verybusylivestocompleteinterviewswithus.Theyareanespeciallyvariedgroup
united by a steely determination to try to provide the best care possible for their
grandchildrenwithdisabilities,whatevertheimpactontheirownwellbeing.
Weareenormouslygratefulforvitalsupportofgraduatestudentsprovidedbythe
SyracuseUniversityAgingStudiesInstituteandtheCenterforPolicyResearch.We
are especially grateful to Dalton Stevens for assistance with interviewing and
editing. Our thanks to Scott Landes, Pamela Herd, Jennifer Dennison Brooks, and
Brian Grossman for key editorial comments. We are grateful to Amra Kandic and
MauraHarringtonforeditingandtoTaraSlaterandJanetCoriaforassistancewith
charts, references, and editing. Special thanks to Kelly, Nicky, and Renee for
feedback on the entire manuscript. We are grateful to everyone at Springer for
theirassistance.
Iamgratefultomyhusbandandchildren,whoarepressedintoserviceforevery
bookduringediting:Jeff,Ellen,Maureen,andSam.Itistheirownfault.Iftheywere
notsogoodatit,Iwouldnotkeepasking!
I am eternally grateful to my sister, Nerlie, and my brothers, Michelaire and
Emmanuel,fortheircontinuedloveandsupport.
ix
Contents
1 GrandparentingChildrenwithDisabilities. . . . . . . . . . . . . . . . . . . 1
GrandparentingChildrenwithDisabilities. . . .. . . . . . . .. . . . . . . .. . 2
TalkingAbout,andRespondingto,ChildhoodDisabilities. . . . . . . . . 12
OverviewofBook. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
GrandparentingChildrenwithDisabilities. . . .. . . . . . . .. . . . . . . .. . 21
2 CumulativeInequalityandtheWelfareState. . . . . . . . . . . . . . . . . 27
TheoreticalFrameworks:CumulativeInequalityfromaLifecourse
Perspective. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
UnderstandingIncreasingRelianceonGrandparents. . . . . . . . . . . . . . 30
Poverty-BasedSocialWelfarePrograms. . . . . . . . . . . . . . . . . . . . . . . 31
SupplementalSecurityIncome(SSI). . . . . . . . . . . . . . . . . . . . . . . 31
Medicaid. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
SupplementalNutritionAssistanceProgram(SNAP). . . . . . . . . . . . 35
TemporaryAssistancetoNeedyFamilies(TANF). . . . . . . . . . . . . 36
LackofFederalBenefitGuaranteesforWorkingFamilies. . . . . . . . . . 36
PaidVacation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
PaidSickLeave. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
PaidParentalLeave. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
FlexibleWorkSchedules. . .. . . . . . .. . . . . . .. . . . . . .. . . . . . .. 38
AffordableChildCare. . .. . . . . . . . . . . . . .. . . . . . . . . . . . . .. . . 38
MethodsandData. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
CumulativeInequalityandtheWelfareState. . . . . . . . . . . . . . . . . . . . 43
PartI CaringforGrandchildrenwithDisabilities
3 Love,Laughter,andSpecialRelationships. . . . . . . . . . . . . . . . . . . 49
RewardsofGrandparentingChildrenwithDisabilities. . . . . . . . . . . . . 49
LoveandLaughter. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
xi
xii Contents
SpecialRelationshipswithGrandmothers. . . . . . . . . . . . . . . . . . . . . . 54
SpecialRelationshipswithGrandfathers. . . . . . . . . . . . . . . . . . . . . . . 59
Love,Laughter,andSpecialRelationships. . . . . . . . . . . . . . . . . . . . . 62
4 DiagnosingDisabilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
DifficultieswithDiagnosingDisabilities. . . . . . . . . . . . . . . . . . . . . . . 65
OriginalDiagnoses. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
OngoingDiagnoses. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76
“WhyMe?”. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79
DiagnosingDisabilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83
5 ModeratelyIntensiveGrandparenting. . .. . . . .. . . .. . . . .. . . . .. 85
ModeratelyandExtremelyIntensiveGrandparenting. . . . . . . . . . . . . . 86
OccasionalCareWork. . .. . . . . . .. . . . . .. . . . . .. . . . . .. . . . . . .. 87
RegularlyScheduledCareWork. . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
Around-the-ClockCareWork. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
ModeratelyIntensiveGrandparenting. . . . . . . . . . . . . . . . . . . . . . . . . 109
6 ExtremelyIntensiveGrandparenting. . . . . . . . . . . . . . . . . . . . . . . 111
IntensiveSupervision. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112
IntensiveMedicalCare. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119
ExtremelyIntensiveGrandparenting. . . . . . . . . . . . . . . . . . . . . . . . . . 129
7 TakingCustody. . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . 131
DifficultiesofTakingCustody. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132
BecomingDeFactoGuardians. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133
BecomingLegalGuardians. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 134
RelinquishingGuardianship. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142
TakingCustody. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145
8 FinancialContributionsandConsiderations. . . . . . . . . . . . . . . . . . 147
TheCostsofFinancialContributions. . . . . . . . . . . . . . . . . . . . . . . . . 148
SpendingRelativelyLittle. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149
SettingFinancialLimits. . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . .. . 153
ShoulderingMuchoftheFinancialBurden. . . . . . . . . . . . . . . . . . . . . 155
FinancialContributionsandConsiderations. . . . . . . . . . . . . . . . . . . . 162
9 ManagingAdultChildren. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
TheChallengesofManagingAdultChildren. . . . . . . . . . . . . . . . . . . 165
ManagingSimilarParentingStyles. . . . . . . . . . . . . . . . . . . . . . . . . . . 166
ManagingConflictingParentingStyles. . . . . . . . . . . . . . . . . . . . . . . . 172
CopingwithSiblingRivalry. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183
ManagingAdultChildren. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187
10 NeverEndingCareWork. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189
TheChallengesofNeverEndingCareWork. . . . . . . . . . .. . . . . . . . . 189
CaringforSiblings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
Contents xiii
SandwichGeneration. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195
FutureCareforGrandchildrenwithDisabilities. . . . . . . . . . . . . . . . . . 198
NeverEndingCareWork. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 210
11 ManagingViewsonDisabilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . 213
ManagingOthers’ViewsonDisabilities. . . . . . . . . . . . . . . . . . . . . . . 213
PositiveViews. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214
NegativeViews. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 215
EducationalResponses. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 221
ManagingViewsonDisabilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 224
PartII ImpactonGrandparents
12 RethinkingWorkandRetirement. . . . . . . . . . . . . . . . . . . . . . . . . . 227
ImpactofCareWorkonGrandparentEmploymentandRetirement. . . 227
ChangingWorkSchedulestoProvideCare. . . . . . . . . . . . . . . . . . . . . 228
KeepingPaidWorktoMinimizeCareWork. . . . . . . . . . . . . . . . . . . . 234
LeavingWorktoProvideCare. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 235
RethinkingWorkandRetirement. . . . . . . . . . . . . . . . . . . . . . . . . . . . 238
13 RedefiningSocialLives. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241
ImpactofCareWorkonGrandparentSocialLives. . . . . . . . . . . . . . . 241
LittleImpactonSocialLife. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 242
RedefiningFamilyasSocialLife. . . . . . . . . . . . . . . . . . . . . . . . . . . . 246
ForfeitingSocialLife. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251
RedefiningSocialLives. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 259
14 EmotionalUpsandDowns. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261
ImpactofCareWorkonGrandparentEmotionalWellbeing. . . . . . . . . 261
PositiveEmotionalImpacts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 263
FeelingAppreciated. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265
NegativeEmotionalImpacts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 270
FeelingUnappreciated. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 279
EmotionalUpsandDowns. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283
15 PhysicalWellbeing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 285
ImpactofCareWorkonGrandparentPhysicalHealth. . . . . . . . . . . . . 285
PositiveHealthImpacts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 287
NegativeHealthImpacts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 290
PhysicalWellbeing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300
16 HowPolicyandPlaceMatter. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303
PlaceandPolicyImplications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 305
EasierAccesstoIn-PersonandOn-LineSupportGroups. . . . . . . . . . . 307
BetterSupportThroughEarlyInterventionandSpecialEducation. . . . 311
EnrichingSocialPrograms. .. . . . . . . .. . . . . . .. . . . . . .. . . . . . . .. 316
ComprehensiveMedicalandRespiteCare. . . . . . . . . . . . . . . . . . . . . 320
StableAccesstoSocialWelfarePrograms. . . . . . . . . . . . . . . . . . . . . 321