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

Only 16% of families received overnight respite. 36% said they needed it.  77% need a week or less. 

Out of 71 families who said they needed overnight respite, 77% felt they needed more than they received.  46% felt they needed significantly more overnight respite care.

BARRIERS TO OVERNIGHT RESPITE

(Of 194 families of medically fragile children)

 35% said barriers were not applicable for their family.

OVERNIGHT RESPITE PROVIDED:    (N=227)

WOULD USE AN OVERNIGHT RESPITE FACILITY*     n=205

*dedicated to quality care for medically fragile children.

In general, people would consider an overnight facility if they knew and trusted the providers and if it was a good environment for children.

·          “Overnight skilled care would be nice but is not covered by Gateway. 24/7 care for short term use (I'm having foot surgery and could use 24/7 coverage for 6 weeks, but it's not covered) for health problems and emergencies would be very useful.”

·          “It would be nice to have an opportunity for me and wife to get away for a couple days while my daughter would be cared for by professionals in a medical facility. It's tough on my wife mostly who tends to most of my daughter’s daily needs. “

·          “Our daughter is nonverbal, does not ambulate by herself and has seizures everyday. We are not comfortable leaving her with people who do not know her.”

SOURCE OF PAY FOR RESPITE                                   N= 188

·          “At the present we are receiving respite care by an R.N. paid for by SWAN and Every Child.  We just found out it will end in October of this year, which is a huge blow to us.  We do not have but one family member to help out.”

AMOUNT SPENT ON RESPITE                          N=203

·          “The MH/MR system used to be able to reimburse money for babysitting. Since they have discontinued this service, I can no longer afford to get a babysitter, so I stay at home all the time with my child. “

·          “We'd love to receive more respite care. We currently receive two hours a week of paid respite/family care. I work two days out of my home as a means to help with expenses and I have to use private pay care givers to cover my needs. We wish that our daughter could go shopping, other social outings, but she cannot tolerate crowds, loud noise, and we have to be very selective of her outings.”

DEMOGRAPHIC DIFFERENCES

Families with incomes under $50,000 said lack of money was a barrier for them to receive respite.  Caucasians also reported that lack of money was a barrier.  There seemed to be an equal difficulty accessing services for all other demographic categories.

Case management and advocacy to get needed services paid for was a high priority.  Some felt a more comprehensive listing of services available would be very helpful.  Others felt that having an independent, proactive advocate/ case manager would be very important to help manage the insurance questions, billing, and to help coordinate care and tests and appointments.  The care of a medically fragile child is daunting enough without having to fight systems too.  Others felt that intake at each of the providers could be streamlined so that each program didn’t require all of the verification of medical condition, etc.

Of all participants (n=217), 124 or 57% have or had a case manager through insurance, MR agency, CYF or another entity.  These case managers, in general, are not addressing a comprehensive set of needs for the child.

·          “Have one source area rather than having to go to 5 places for help or questions.  Our life is already difficult without the roller coaster effect of where to go for this and that.”

·          “The case management services would be a huge benefit.  I spent everyday at the hospital and then came home and had to phone doctors to coordinate care and tests and appointments.”

·          “Our child has a terminal illness. She has dramatically turned downhill since 12/24/04. I have no idea where to find support.”

AGENCY CASE MANAGER

(Of the 124 with a case manager)    

·          “Better sourcing for networking - most agencies seem to function independently of each other and you get different answers to the same question.”

·          “While parents of special needs children are told there are a lot of services out there, why are these wonderful services so difficult to obtain and/or difficult to find out about them? It's like they are a secret.”

LIMITATIONS OF THE AGENCY CASE MANAGER                                 N=124

Of all families with a case manager provided by an insurance company, over half reported that they only assist with issues related to their agency.  They also reported was that case managers only give information about things for which the family specifically requests information. 

·          “Patient and family advocacy, where the advocate is independent and not employed by hospital or doctors.  A coordinator who works with parents to address insurance and billing issues and problems.”

·          “I have two children with problems and it seems to me I am their only advocate - case managers - BSU are not helpful. They tell me to call or find service.”

·          “Case management needs to look more at natural supports provided within communities and how kids/families can "fit in" more.”

IMPROVEMENTS to CASE MANAGEMENT     (n=227)

·          “It would be helpful to offer a course soon after time of discovering health problems - providing info on services available, how to navigate the medical system, etc.”

·          “I believe knowledge is power and gives one a sense of limited control over and uncontrollable situation like a life limiting diagnosis of a child (or anyone).  Availability of information on how to cope, how to survive, how to relax, etc”

Of all families medically fragile with a case manager, 64% said that more comprehensive case management services are needed for their child.  57% of all families agreed.  The case management that is being provided is not adequate to the need.  All families need to have access to excellent comprehensive case management.

DEMOGRAPHIC DIFFERENCES

·          Caucasians were slightly more likely to have a caseworker or social worker.

·          Caucasians were more likely to request that a case manager provide emotional support (27% vs. 16%) and that a case manager be assigned at diagnosis. (21% vs. 3%) 

·          Families with incomes over $50,000 were more likely to request assistance from caseworker for navigating the medical system. (39% vs. 27%) and for help navigating insurance system (6% vs. 2%)  Parents with incomes over $50,000 thought that having a caseworker assigned at time of diagnosis would be helpful (26% to 15%).

·          Families receiving Medicaid were much more likely to request a case manager’s assistance for finding other services (59% vs. 45%) and much less likely to request assistance navigating insurance (1% vs. 7%)

·          Families with incomes under $50,000 were slightly more likely to have a case manager (55% to 43%).

Most respondents stated they would prefer their children remain at home for their care. A few stated they would consider long term care if the situation warranted. 

No families received long-term care.  Overall, 22 families (11.4%) said they would consider long-term care for their child if there was a facility expressly designed for children.  43 families said they thought their child’s needs were serious enough to be considered for long-term care.  Most would not consider it as an option. Families reported that they and the child would need to feel comfortable with the care givers and stressed the importance of having a strong personal relationship with them.

How long would you have needed long-term care? N=199

Most view long-term care as extended respite, and not a new “home.”

·          “I will take care of my child as long as I am able.”

·          “We love her and want her in our family.”

·          “My child's place is at home.”

·          “Sometimes I feel unable to adequately care for my child.”

DEMOGRAPHIC DIFFERENCES

 Families receiving Medicaid were slightly more likely to consider a long term placement if a facility designed expressly for children. (16.5% vs. 8%)  Non-whites were also more likely to have considered placing their child in a long-term care facility. (14% vs. 4%)  Although not quite statistically significant, there is a greater likelihood that single/divorced/widowed parents are more likely to consider a long-term placement if expressly designed for children. (17% vs. 9%) as well as families with incomes over $50,000 (15% vs. 8%)

Greater understanding from medical professionals

There was a wide array of positive and very negative experiences with medical professionals.  In general it seems that professionals need for more training in helping families as a child is dying.  The focus is so frequently on curing a child.

·          “The staff and doctors at Children's have been wonderful throughout the years. That was a big help.”

·          “It felt extremely disturbing to not have my son’s death acknowledged by the neurosurgeon or radiologist, caseworker or other members involved in his care.”

·          “We rarely had the opportunity to speak to the neo-natal doctors and my husband's concerns were dismissed.  I was told by a nurse that my husband should "chill out" and that he asks too many questions.  Kelly was very fragile and it seemed as if no one but my family believed this and it seemed as though the hospital was anxious to release her.”

·          “I wish all doctors would communicate with each other.  I would feel much better if specialists and PCP were all involved to find best treatments, instead of conflicting and confusing parents!”

·          “Better accommodation for family members to stay with their child in the hospital.  My son wanted as many people with him as possible when he was still in the hospital.  It was not even easy for me as his mother to stay.  At least make it comfortable for one's parents to be with their child.  I never left the hospital.”

Families with medically fragile children reported very little experience with hospice. Though many stated it was not a service they needed at this time, they expressed their receptiveness to using this service, if needed, in the future.

HOSPICE SERVICES RECEIVED

(Of families who had experienced the death of a child N=33)

The number of children receiving hospice is artificially high, due to the fact that half of the surveys to this population were distributed by hospice programs.  National statistics cite about 1% of children who die receive hospice services.[2]

LENGTH OF TIME RECEIVING HOSPICE         N=18

HOSPICE REFERRAL SOURCE
(For families who experienced the death of a child N=33)

Only 8% of families with medically fragile children were given information about hospice services.  Of the families who had someone discuss the possibility of their child dying, only 11% percent were given information about hospice services. 

All but one of the families who experienced the death of a child were referred to hospice.

·          “Would like in home hospice when necessary.”

·          “It is great for those who need it who want to keep their kids at home.”

70% of families would recommend hospice to others. This includes some families who did not receive services.  Only one family who received hospice would not recommend it to others. A second family said yes they would recommend it, but not in their home.

·          “We were also pleased with the limited amount of help we received from hospice.”

·          “Hospice programs are wonderful because anyone losing a loved one needs support and assistance, and hospice has always stepped in and helped us. Our daughter has hospice service for two years, but amazingly graduated from it!”

·          “We were going to have hospice at the end so we could bring Erin home but she said not.  We knew she did not want her family to wake up and find her. “

·          “Our son died suddenly the day he was supposed to begin hospice.”

·          “Have only ever heard wonderful things about hospice. Would utilize this service if necessary.”

·          “The service can be a blessing for the patient's family in that home care could become a tremendous burden or an impossibility.”

·          “Not appropriate at this time, but if ever needed, it would be a great service.”

DEMOGRAPHIC DIFFERENCES 

All of the families who received hospice were Caucasian, however only one family who experienced the death of a child was non-white.  There were no other demographical differences.

Discussions about the possibility of child dying

34% of families with a medically fragile child had someone discuss the possibility of their child dying.

76% of these families said that the conversation about their child dying was helpful or somewhat helpful.

Helpfulness of Conversation Regarding Possibility of Child’s Death

•         “We discussed options - not facing it alone. Knowing exactly what the possibilities were was helpful”

•         “They simply asked if they should do everything to keep our child alive.”

•         “We are aware that his illness keeps him fragile. So we try to prepare ourselves for the worst.”

•         “They were straight forward and told us everything.”

•         “She said my child would likely not live to adulthood and die of respiratory problems.”

•         “Helpful in making decisions about her care.’

•         “I refuse to accept statistics.”

•         “They gave basic info and generalizations only - but I continued treatment and we had improvement.”

•         “Knowing the reality of our situation and to enjoy life.”

•         “We knew what to expect.”

•         “To plan for handling the situation with our other children.”

•         “He only stated she would be lucky to live to age 3.”

•         “Discussions/development of living will.”

•         “It is impossible to deal with a family death without support.”

•         “We know a little about what to expect but the time can be forever.”

•         “Very blunt and uncaring.”

•         “To remind me of the reality of her life.”

•         “He confirmed our fears.”

•         “It was an honest conversation with heartfelt emotions.”

•         “To assist with the reality of his situation.”

•         “It mentally prepared me in some ways. I now know what to expect medically.”

•         “Sometimes, depending on the conversation, it was helpful for me to know I do all I can for my child, and also realize that my child's life is very fragile and special while he's here.”

MOST HELPFUL SOURCES OF PROFESSIONAL SUPPORT

REGARDING END OF LIFE ISSUES AND DECISIONS    N=33

DEMOGRAPHIC DIFFERENCES

There were no statistically significant correlations about end-of-life issues and demographics.

GRIEF SUPPORT

There was some need expressed for more proactive support for grief.  It seems that referrals and information is a barrier.

SOURCE OF PERSONAL SUPPORT THROUGH
GRIEVING PROCESS                N=33

GRIEF SUPPORT RECEIVED                             N=33

The fact that so many people recommend grief support implies that there are barriers to receiving support.
 

THE MOST SIGNIFICANT BARRIERS WERE:     N=33

·          “There was absolutely no grief support available from the hospital where he had spent so much time and received so much support during his life.”

·          “More sibling grief counseling.”

·          “Counseling services for our sick child.”

Why recommend grief support:

·          It's such a tremendously difficult loss it requires some support to work through, and friends and family do not know how to address it properly, so simply avoid the topic.

·          The whole family’s sense of security and ability to depend on each other is damaged - outside support is important.                                                                                                                             

·          Surviving sibling grief is another whole issue that needs to be addressed more.                                                                     

·          It helps to be able to talk openly with others who share the pain and experience.                                                                                                                                                              

DEMOGRAPHIC DIFFERENCES

Non-whites were more likely to receive support group help. Those receiving Medicaid were much less likely to receive grief support after death (27% vs. 64%); similarly those with private insurance received grief support more frequently (65% vs. 31%)

MEDICAL EQUIPMENT

Access and funding for medical equipment can make the difference of a family get out of the house, communicate with other children and not only prolong life, but improve the quality of life. 

·          “There should be a place where families can rent or borrow major therapeutic equipment for short periods of time.” 

·          “More funding for adaptive equipment.”

HOUSING & HOME MODIFICATIONS:

Access to funds for home modifications—about 10 people mentioned needing assistance with making sure their home is accessible and supportive.

·          “I would like help making home more handicapped accessible for my child.”

·          “Funding for stair lift, van lift.”

·          “Services for handicap restoration in my home including ramps, handicap bathroom, and other things needed for my wheelchair bound child.”

·          “Finding financial aid for home improvements.”

·          “A service that would come in the home and do a survey of what changes could be made structurally to help make life easier. For instance, making a door wider for the wheelchair to fit through or adding a chair lift to the stairs so lifting would be eliminated. There should be funding available for this regardless of the income.”

RECREATIONAL ACTIVITIES FOR CHILDREN & THEIR FAMILIES

Isolation of children and their families is a real concern.  Families reported an interest in more activities designed for medically fragile children.

·          “Connecting children age appropriately for friendship and socialization.”

·          “Trying to get my child out in the community.”

·          “There should be a place where families can rent or borrow major therapeutic equipment for short periods of time.  So when families want to go away together or experience activities together with their special needs child they can.  For example, a sand stroller to roll a child across and ocean beach, maybe adaptive equipment to help a cripple to ski, etc.  These items won't be covered by insurances; families only need these items a few times a year.”

TRANSPORTATION

Some parents expressed that lack of transportation was a barrier to getting to appointments and recreational activities.  Others requested financial assistance for transportation.

·          “Information on funding for transportation needs etc.“

FINANCES

Families are worried about their financial situation.  Even families with middle incomes were really struggling because of the high costs of care.  The lower-income families seemed to be drowning—needing the basics like food, utilities, and clothing. The double need of income and health insurance mixed with needing full care for their child was very difficult. 

·          “Something that would help me get clothes and shoes for my child. “

·          “Any help with medical expenses would be greatly beneficial”

·          “Help with utilities and food.”

·          “My husband and I are separated. We got married almost 5 years ago and my husband had no idea what to expect. Now for the 2nd time I am doing this alone. I really do believe that having a second help for the home would improve things a lot. We live on $1,000 a month to pay for all needs. It isn't enough.”

LONG TERM PLANNING:

Families want more information and services to plan for their medically fragile children who may live into adulthood.

·          “Setting up an information session to help me plan financially for my daughter’s future”

·          “Something that I worry about is if I die, who will take care of him. Is there a place that can be entrusted to his care if he never is able to fit into society?”

·          “Our child is 13 years old and I would like to plan for his adult future.”        

EDUCATIONAL ADVOCACY     

Families need assistance to understand the educational system—what their children are entitled to, how to maneuver through the special education system, what support systems ought to be offered for their child, and how to appeal a decision regarding their child’s Individual Educational Plan (IEP)

·          “How to manage the school system, special education, mobility needs, educational needs, etc.”

·          “We need to have more support in place to help inform parents about their rights to a public education.”

SUPPORT SERVICES

Support groups for medically fragile children and their families were mentioned as a need by a few families.

·          “Support groups for children with special needs.”

·          “The online support group for neuroblastoma was a huge help.  I met families going through the exact same thing.  They shared every detail of their experience, both medically and emotionally.  When we traveled out of town for treatment I knew families there.  When my daughter was dying I knew what to expect because others had shared their last days online.  Nothing locally helped me like that. “

·          “Our child has a terminal illness. She has dramatically turned downhill since 12/24/04. I have no idea where to find support.”

·          “I have found that things are very limited to someone with a child as bad off as mine. Everyday life is a struggle for myself as well as my child. I manage the best I can, but I wish there was more organizations to help people like myself. “

SERVICES IN OUTLYING COUNTIES

  Some expressed frustration at the lack of services available in outlying counties.

·          “More programs for children with disabilities in Fayette County so we wouldn't have to travel to other counties for help.”

·          “Information on what is available in Beaver County .”

MH/MR DIAGNOSIS

·          “My daughter has CP w/o MH/MR therefore it is extremely difficult to receive services. This "gray area" as I call it, needs to be examined more, and more services need to be available for children.”

·          “There is a huge gap between those MR persons who are on a waiver and those who are not. They need to reinstate the $3,000 per year funding that existed about six years ago. Now those who are not a waiver have virtually no source of funding.”

·          “Why must you label your child as MR to obtain any help?”

·          “My child needed mental health help because of her medical condition and because I am a single parent who had to work to maintain the insurance she needs for her medical condition she was unable to get all the help required. It is very difficult being in a catch 22 situation and very stressful to the parent.”

AGE:

·          “Ryan's grandma tries but she is 80 years old and Ryan weighs 195 pounds so we can't burden her.  Ryan attends a wonderful school - Pressley Ridge-- they are our life line.  Ryan goes camping 2-3 full days once a year which is fantastic, but Ryan will be through Presley Ridge in two years.  Then we will be back to square one.”

·          “Once a child is older (than 7) the services seem to end, as if they are "too old." It's a shame.”

RESPITE:

There is a limited availability and funding for respite especially for children who do not have an MR diagnosis.  Most families report that they need both more daytime and overnight respite.  There was both a lack of funding and a lack of facilities for overnight respite.

Demographical differences:  Families with under $50,000 in income reported that lack of money was a significant barrier more frequently than other families.

CASE MANAGEMENT:

A majority of families say they need more comprehensive case management services.  Better case management would ensure that families are receiving all of the services they need and would help them navigate their way through a complicated system.  Families also thought that the case management was too closely related to the services the agency provides, and didn’t provide comprehensive information.

Demographical differences:  Caucasians and families with incomes under $50,000 were more likely to have case managers.  Higher income families were also more likely to request assistance with the medical and insurance systems, having a caseworker assigned at diagnosis.  Caucasians were more likely to suggest that a case manager provide emotional support and be assigned at diagnosis.

LONG TERM CARE:

Some families said they would consider long term care if the needs of the child were significant enough and if the facility were expressly designed for children. They also felt that a strong relationship with the personnel was needed.  Most of these families viewed it as longer-term respite care, but not as a new “home.”

Demographical differences:  Families receiving Medicaid were more likely to consider a placement if a child-centered facility were available, and non-whites were more likely to have considered placement.  There is some correlation with single parent families and families with incomes over $50,000 with a higher likelihood of considering placement if a child-centered facility were available.

HOSPICE & END OF LIFE:

End-of Life conversations were viewed as helpful to the family in helping them prepare for the future.  Many families were not referred to hospice. The discussion about hospice services needs to happen more frequently as it may be one of the barriers to having families use the service.  Over half of families recommend anticipatory grief counseling, although few received it.

Demographical differences: There were no statistically significant differences primarily due to the size of the sample.  There was a higher correlation for people with private insurance to be referred to hospice.

GRIEF SUPPORT:

Most families find that grief support has been helpful.  There was a gap between those who recommend it and those who are receiving it.  Additional work needs to be done to share information, provide access for families, etc.  Sibling support was also mentioned.

Demographical differences:  Non-whites were more likely to report receiving support group help. Those receiving Medicaid were much less likely to receive grief support after death.