Family Survey Results

Winter 2005

SURVEY RESULTS

The survey was mailed to approximately 1020 families in January and February of 2005.  Of these, 875 were sent to families with medically fragile children; 150 to families who had experienced the death of a child. Organizations participating in the coalition sent out the survey with a cover letter to appropriate families on their lists.  The bulk of the mailing was done by the Make-A-Wish Foundation of Western PA.  It is possible that some families received more than one survey.

·          Total surveys returned: 227

·          Medically fragile: 194

·          Child who has passed away: 33

·          Return rate:  22% This is much higher than an average of 10% return for mailed surveys.

COUNTY

HOUSEHOLD INCOME

·          There was a fairly even distribution of income—with a fairly high percentage at or below median household income. (55% at $50,000 or less)

·          (Median income for Pennsylvania is $40,000)

HOW MANY SIBLINGS?          (N = 225)

 Most families are caring for other children in addition to their medically fragile child. (84%) This makes needs for respite and sibling support even greater.

INSURANCE          (N = 227)

We believe the number of children on Medicaid was reported low.  Most if not all of the medically fragile children would qualify for Medicaid.  It is likely that those listing “other” or “other government plan” actually are receiving Medicaid but think of it as “Gateway” or “UPMC”, the provider of the Medicaid services.

RACE          (N=227)

 This sampling is fairly representative of the population surveyed (84% of Allegheny County residents and 96% of Westmoreland County are White.  )

DIAGNOSIS:                                                     N=227

 BORN WITH CONDITION:                           N=222

AGE 

DEMOGRAPHICS FOR FAMILIES WHO HAD EXPERIENCED THE DEATH OF A CHILD 

WHERE DID CHILD PASS AWAY?        N=33

Of the children who died, 18 received hospice.

 AGE OF CHILD AT DEATH                                N=33

HOW RECENT WAS THE CHILD’S DEATH?       N=33

 Half of the respondents whose child passed away are referring to experiences of how the system was over two years ago. 

SERVICES RECEIVED:                                            n=194                 n=33               n=227

DEMOGRAPHIC DIFFERENCES

·          Non-whites were slightly more likely to have reported that their families received no services. (42% vs. 29%) [1]

·          Lower income families had similar knowledge about services available as higher income counterparts.  They also reported receiving no services at a similar rate as their higher income counterparts. (There was a slight increase in reporting no services as incomes rose).

·          Married parents were slightly more likely to know about services than single/divorced/ widowed parents. 

RESPITE

Respite was the biggest issue for most respondents. Having the funds to pay for respite care was the biggest barrier.  Many had home health care providers, but didn’t have access to funding to pay for respite care hours. Families reported a need for additional overnight respite care, but had a mixed response to facility based respite care.  Some reported that they would use facility-based care, others wanted in-home respite only.  Those that thought they would use a facility reported the need to be comfortable with the caregivers and the importance of developing a long term relationship with them. 

82% OF FAMILIES HAD HEARD OF RESPITE CARE.

DAYTIME RESPITE:

RESPITE PROVIDER:                                        N=227

*The other category was generally a privately hired caregiver.

N= 198

AMOUNT OF DAYTIME RESPITE RECEIVED      n=206

Twenty-five percent (25%) had six or less hours a week.  57% of families need respite care.

Out of 123 families who needed daytime respite for their child, 50% felt they needed more daytime respite hours than they received.  A third needed significantly more respite than they received.

BARRIERS TO RESPITE

(For families who have experienced the death of a child n=33)*

*this question was worded differently on the two surveys

WHO REFERRED YOU TO RESPITE   n=194

OVERNIGHT RESPITE

 OVERNIGHT RESPITE                          n=192