Home About Us Programs & Services Income Businesses Articles Downloads Links Contact Us Maternal Child Health Block Grant (MCHBG) Consumer Focus Group Final Report by sisterlink | Articles Table of Contents Background………………………………………………………………………………3 Overview………………………………………………………………………………….4 Summary of Demographic Data……………………………………….………………..7 Summary of Findings Use of Health Care Facilities and Access……………………….……………….7 Interaction with Health Care Providers……………………….……………….9 Community Experience with Health Plans……………………………………11 Health Concerns of communities………………………………………………13 Sensitivity of health care providers to community……………………………….14 Dissemination of Health Information…………………………………………15 Awareness of and Access and experience with programs…………………….16 Impact of September 11, 2001…………………………………………………18 Individual Focus Group Reports Focus Group Questions…………………………………..…………………….21 Homeless Women………………………………………….…………………… 23 Native American Women………………………………….………………….. 28 Dominican Women ………………………………………..………………….. 33 Far Rockaway Community……………………………….…………………… 37 Middle Eastern Women………………………………….……………………. 42 Nassau County Community.…………………….……………….…………….48 Asian Women………………………………………………………………….. 52 Participant Focus Group Evaluation ………………………………………………… 55 Appendix Consent Form Demographic Survey Evaluation Questions The New York State Department of Health’s Division of Family Health and Health Research Incorporated awarded state funds to Northern Manhattan Perinatal Partnership Inc., to conduct focus groups for New York’s Maternal and Child Health Block Grant (MCHBG). The purpose of the focus groups was to obtain information on the health care needs of pregnant and parenting women. These assessments were aimed at assisting the NYSDOH in focusing MCHBG activities on monitoring and evaluating maternal and child health programs and improving the health status for mothers, infants, children and teens in New York State. Accordingly, it has been recommended that a series of focus groups be conducted to examine these issues within seven different population groups. The Northern Manhattan Perinatal Partnership, Inc. (NMPP) was established in 1991 as part of the New York State Department of Health’s effort to stem the tide of poor birth outcomes in the Harlem community. NMPP has been charged with the task of implementing community-based interventions and mobilizing a consumer driven coalition that could impact the high rates of infant mortality and morbidity in Northern Manhattan. For the past eleven years, NMPP has been serving predominantly African Americans, Latino, new immigrants and low-income populations. Its mission is to improve women’s access to prenatal care through outreach, education, case management, and collaboration with health care providers. Over the last five years NMPP has assembled a strategic agenda to make sure mothers and babies in Central Harlem are healthy and experience normal development. NMPP’s Social Health Marketing Group’s research history includes an investigative study that assessed community reaction to Child Health Plus among residents of Central and West Harlem. NMPP’s Social Health Marketing Group developed position statements, which were utilized for a major advertising campaign endorsing Child Health Plus. Northern Manhattan Social Health Marketing Group The Social Health Marketing Group (SHMG) is composed of administrative, marketing and other program staff organized to develop marketing, outreach and advertising campaigns for social service agencies, health facilities and private businesses. The SHMG is a subsidiary of the Northern Manhattan Perinatal partnership, Inc. The SHMG is a creative team, whose mission is to research, identify, target, motivate and persuade customers to utilize the service of hospitals, clinics, social service agencies and businesses. OVERVIEW Northern Manhattan Perinatal Partnership’s Social Health Marketing Group conducted seven focus groups to gather information on health care experiences of pregnant and parenting women throughout the New York City metropolitan area. Seven communities and organizations participated in the focus groups. They were: * Homeless Women, November 7, 2002, 12 pm American Red Cross Family Shelter 515 West 41st Street NY, NY 10036 * Native American Women, November 19, 2002, 12 pm Poospatuck Indian Reservation Community Center 151 Poospatuck Lane, P.O. Box 86, Mastic NY 11950 * Dominican Women, November 22, 2002, 1 pm Northern Manhattan Perinatal Partnership 127 W 127 Street, NY, NY 10027 * African American Women (Far Rockaway), December 3, 2002, 1 pm Queens Comprehensive Perinatal Council, 106-46 Guy R. Brewer Blvd Jamaica Queens NY 11433 * Middle Eastern Women, December 17, 2002, 1 pm Muslim American Society Community Center 1933 Bath Avenue, Brooklyn, NY * African American Women (Nassau County), December 19, 2002, 1 pm Nassau County Health Department 26 Main Street, Hempstead NY 11550 * Asian American Women, December 20, 2002, 8 am Charles B. Wong Community Health Center 268 Canal Street, NY NY 10013 Study Design Seven (7) focus groups were conducted for this research study. The population surveyed varied in location, ethnicity and demographics. Participants were screened by the host agency as well as by the Focus Group Coordinator. Each participant was screened to have at least one child less than 12 years old and or currently pregnant. Most respondents had children under the age of 5 and many were currently pregnant. All participants represented the population being surveyed. Participants were recruited through the use of flyers, newspaper advertisements, word of mouth and current participation in a host agency program. Recruitment for the homeless population was conducted at the American Red Cross Family Shelter. These women were recruited on site. The Dominican women were recruited in the Washington Heights community. Flyers were the primary means in recruiting this population group. Native American women were recruited on the Poospatuck Reservation in Suffolk County. The Poospatuck Community Health Center assisted in screening the women prior to the group. The recruitment process for the Far Rockaway participants was done primarily through the Queens Comprehensive Perinatal Council in collaboration with The Visiting Nurses Services of Far Rockaway. The Middle Eastern women were recruited via word of mouth with the assistance of Aziza Hussein (New York City WIC). The utilization of a native Middle Eastern woman was instrumental in building trust within this population. Nassau County women were recruited through the efforts of the Nassau County Health Department. Lastly the Asian women were recruited through the Charles B. Wong Community Center located in the heart of China Town. Translation services were utilized for the Dominican, Middle Eastern and Asian focus groups. The Asian focus group was completely facilitated with the use of a translator. Each focus group was conducted at different times convenient to each population. For example, the Middle Eastern focus group was conducted after Ramadan (a Muslim Religion) per request of that community. Each session lasted approximately an hour and a half to two hours long. The sessions were audio taped with the verbal and written consent of each participant. Confidentially was assured for each group as well. Participants were reimbursed for their time and transportation. Childcare was provided when needed. Women who utilized private childcare providers were reimbursed for their childcare expenses. Culturally appropriate health foods were provided at each session. Program Staff Jodyann Buckle, M.A. and Henry Ampofo, MPH both SHMG members responded to the request for applications from the New York State Department of Health and wrote the proposal that was accepted on behalf of NMPP. As Program Coordinator, Jodyann Buckle solicited the participating maternal and child health agencies and community organizations and assisted them with participant recruitment. Ms. Buckle managed the budget as well as supervised the administrative staff. Lensa Gelana, M.P.H facilitated six focus groups throughout the metropolitan area and prepared a written report on each focus group facilitated. Ms. Gelana with the assistance of program staff prepared a comprehensive qualitative report on seven focus groups evaluating the trends and findings of each group. A seventh group was facilitated in collaboration with Jodyann Buckle. Mario Drummonds, MS, CSW provided administrative oversight for the entire project. He guided the project from a methodological perspective and helped determine the policy and practice implications to the research findings. Limitations of the Research The focus group interview seeks to develop insight and direction rather than quantitatively precise or absolute measures. Due to the limited number of respondents involved and the special recruitment methods employed, this research must be viewed as exploratory in nature and should be considered in a qualitative frame of reference. Concomitantly, verbatim comments, where they are included, have only been used to convey to the reader the tenor and tonality of response. Areas of Investigation Topics covered in each session included questions on the following areas of interest: * Use of health care facilities * Interaction with health care providers * Communities experience with health plans * Health concerns of communities * Dissemination of health information * Awareness, access and experience with government programs * Impact of September 11, 2001 Group # of Participants Demographic information Homeless Women N=15 Most 30-40 All Black, African American,1 Puerto Rican Most not employed Native American Women N=12 Most 30-40 4 Black,4 American Indian, 2 Tribes (Pospatuck, Ukechaug) Most were employed Dominican Women N=09 (4) 20-30, (2) 30-40, (3) 40-50 All Dominican Most not employed Far Rockaway Community N=13 Most 20-30 All Black, African American, 3 Puerto Rican, 1 Mexican American Most not employed Middle Eastern Women N=16 Most 30-40 7 White, 6 Middle Eastern, 1 North African Nassau County Women N=15 Most 20-30 All Black, African American,1 Puerto Rican Most not employed Asian Women N=14 Most 20-30 All Chinese Most not employed Type of Insurance Parent Total Number Percent None 13 24% Private 3 5.4% Medicaid 50 91% Managed Care 3 5.4% Social Security Supplemental Income (SSI) 2 3.6% Social Security Supplemental Disability Income (SSDI) 2 3.6% Other 3 5.4% Did not specify * some participant had more than one form of Health Insurance Plan Type of Insurance Child Total Number Percent None 7 12.7% Private 0 0 Medicaid 50 90.9% Managed Care 8 14.5% Physically handicapped children’s program 0 0 Child Health Plus 18 32.7% Medicaid wavier 1 1.8% Other 1 1.8% Did not specify 0 0 * Some participant had more than one form of Health Insurance Plan Use of Health Care Facilities and Access When asked about the health facilities they visited, most participants from each group reported visiting a clinic or hospital near their homes. Those who traveled further than their community to access health services did so when they relocated but wanted to keep their provider, or when they needed to see a specialist. A significant number of participants in each group also reported that they visited a different clinic than their children. The majority of participants reported having difficulty getting to health care services with their children due to the inconveniences of carrying a stroller. Most said that although the clinics were within their communities, it was very difficult to use buses and trains with strollers. The Native American women were the only group who reported having no difficulty getting to health care services adding the clinic they visited was “up the street.” All recommended that car services be available to pregnant and parenting women to facilitate easier access to health services. Some women from the Nassau group said they liked their health plan especially because it covered car service. Frequency of Health Care Visits When asked about the frequency of visits to the doctor, most participants reported that they went to the doctor about twice a month if they had infants and small children and less frequently for themselves. By group, women from the Chinese community reported visiting the doctor the least, followed by the Dominican group and Far Rockaway group. The Native American, Middle Eastern, Homeless and Nassau women had the highest frequency of visits averaging once a month. In each of these groups, women whose children had asthma reported the highest frequency of visits. Well-Child Checkups All participants from each group reported that they took their children to well-child check ups and immunizations. Interaction with Health Care Providers Communities dissatisfied with health care experiences Participants from the Homeless, Far Rockaway and Middle Eastern groups said they were dissatisfied with their health care providers and with the services they received. The main cause of dissatisfaction expressed repeatedly from each group was the amount of attention giving to them by providers. Words like “rushed, not thorough, did not answer questions” were used to express their interaction with providers. Participants said rushed visits made them question the competence of health care providers and they did not trust doctors to give them the right information. In each group, participants said that doctors had misdiagnosed their children’s illnesses, adding to their distrust. Participants in all the dissatisfied groups said they preferred to address their health concerns at home or within the community, rather than visit the doctor. They said that going to the doctor was their last option and they tried to avoid it as much as possible. Additional issues listed by community Participants from Far Rockaway, most of whom were under the age of 21, said that they were discriminated against because of their age. They said that providers did not consult with them about medical decisions that needed to be made for their children because they were young parents. They also said they believed age discrimination was operating when medical students were allowed to visit them or their children without their permission or when providers called Administration for Children’s Services (ACS) without speaking to them. The majority of participants from the Middle Eastern community expressed great dissatisfaction with Lutheran Hospital, the main hospital used by the community. They said the hospital was overcrowded, did not have enough doctors, and experienced very long waiting time when they arrived for their appointments. They also reported an average waiting period of three or four months to get an appointment. Some said even once they were given an appointment, they were told that their case was not an emergency and were sent home with another appointment. Communities satisfied with health care experiences Participants from Poospatuck, Dominican, Nassau and Chinese groups reported being satisfied with their health care experiences. Participants from these groups said they liked their providers because they took time with them, listened to them, explained medication and medical procedures to them and promptly referred them if necessary. They said they felt at home at the doctor’s office because they felt the providers knew and cared about their families. These participants found the staff of clinics they visited friendly and they said the doctors were good. They said they can “get seen” if they walk in which was also a benefit they enjoyed. These respondents said that once they found a provider they liked, they made every effort to stay with that provider. Participants from Far Rockaway who received services from Visiting Nurse Services (VNS) said they liked their program for pregnant and parenting teens. Some made use of the birth assistants who were available to the program and strongly recommended that others use them. They said it made a great difference in their experience. They felt that the assistants were compassionate to teenagers. Some participants from the Nassau group who received visiting nurse services said they found it useful and recommended it be available to more women. Participants from the Poospatuck and the Chinese communities reported that they liked the cost of the clinics they went to because they were affordable. What could be different at the clinic? When asked what could be different at the office or clinic that they visited. The overwhelming response of women from all the groups was the long waiting periods before doctors saw patients. They said this was an especially relevant concern for women who were pregnant with special dietary requirements. Participants’ Suggestions to Improve Experience with Health Care: * Employ more health care workers who are friendly and compassionate towards the hardships patients experience in their lives, which affect their attitudes towards providers. * Take time with patients to explain all medical procedures and medications. * Shorten waiting periods to be seen by a provider. * Occupy the time of those who are waiting to be seen with activities, such as filling out necessary forms, taking temperature, pressure etc. * Have area for children to play or have movies for them to watch so they don’t get upset and add to the stress of parents in the waiting room. * Improve continuity of care with the same provider to improve quality of care and increase faith in the competence of providers. Community Experience with Health Plans Health Coverage Most of the women who participated in the focus groups had health coverage, although the Dominican group was the only one where every participant had insurance. Of those who did not have health insurance, most said that they knew how to access health insurance. Many in this group also said that there was a community health liaison they knew who could help them access health coverage. A few participants from each group who did not have health insurance reported that they did not know how to access health insurance. Experience with Health Plans All groups except for Middle Eastern and Far Rockaway said they were satisfied with their health plans and it covered their health needs. Participants with Medicaid were the most satisfied with their coverage. Although there were a few in each group who were dissatisfied with their health plans, most in the Far Rockaway and Middle Eastern group reported that they were not satisfied with their health coverage. The reasons for dissatisfaction were consistent in every group. They included: * Participants said they did not completely understand what their plans covered or how they worked. As a result, they had surprise bills they did not expect and as a result still owed money to medical institutions. For example many said that they did not know Medicaid would not cover an ambulance when they called for emergency. They recommended that health insurance programs make it clear as to what was and what was not covered. * Participants said they wanted acceptance of their health coverage at a greater number of clinics and hospitals. Many said that they have either been turned away or their access to services limited because their health plan was not accepted at some hospitals they visited. * Participants wanted improved access to specialists. They said it was difficult to find a specialist who was located in an accessible area and who accepted their health insurance. They also said their health coverage should not restrict them from accessing the specialist they or their children needed. * For the Native American group, the main dissatisfaction with the Indian Health Services plan was that it did not pay for in-patient care, and patients were expected to pay out of pocket. * Some participants from the Middle Eastern group reported that there was confusion about the difference between Health Plus and Family Health Plus. They suggested that names of health plans be very different from each other for easier identification. Issues with Prescription Medication * Many participants said that they should not have to visit a doctor to get prescriptions refilled. They reported that they run out of prescriptions quickly, especially if they were managing a chronic illness and it was not cost and energy efficient to have to see a doctor to get another refill prescribed. In addition, if they were not able to get prescriptions refilled on time, they had to pay out of pocket. * Medicaid should cover prescription medication better because they were too expensive to pay out of pocket and most people could not afford them. Participants said although they had health insurance, in the end they paid out of pocket for services and medication. * Participants with high blood pressure and diabetes who required ongoing medication said when Medicaid expired and they needed to reapply, they could not access the medication they needed to manage their chronic illness. Not having the medication could be life threatening so they had to pay out of pocket for very expensive medication. * Middle Eastern and Homeless groups said that they did not want Medicaid to give them generic drugs because they believed they did not work as well. Experience with Medicaid * Some participants did not know that they were supposed to enroll with a managed care health plan if they were receiving Medicaid. Some said they found out too late that they had to select a provider, which resulted in them loosing a doctor that they liked and wanted to keep. * Some in the Middle Eastern group said that although they were approved for Medicaid, they never received the card, which made it difficult to access services. Some said there was a lapse of time between their approval and their notification, which they found inconvenient. * Participants were concerned that Medicaid limited the number of visits and surgeries they could have. Those with chronic illness like asthma or diabetes, said they could not control when they will have the need to visit the doctor. Health Concerns of Communities Asthma, high blood pressure, diabetes, HIV/AIDS and STI, depression and drug abuse were identified by most groups as the most important health needs of their community. The table below details the health concerns of each community. Homeless Women Native American Women Dominican Women African American Women (Far Rockaway) Middle Eastern Women African American Women (Nassau County) Asian Women Asthma, Asthma High Blood Pressure HIV STI Asthma Asthma, TB HIV/AIDS High Blood Pressure Heart Disease Asthma, High Blood Pressure HIV/AIDS Hypertension TB Diabetes Diabetes Drug Abuse Hepatitis C Diabetes Hepatitis B Syphilis Depression Depression Depression High Blood Pressure Pink Eye Obesity Sickle cell HIV and STI Anemia Breast cancer Drug Abuse NOTE: The Asian group was the only one where the majority of the women said they were not aware of what the health needs of their community were. This group was also the only one that had the least number of diseases in common with other groups. Sensitivity of Health Care Providers to Community Participants who were satisfied with provider sensitivity All participants, except for those from Far Rockaway, said that they were treated with respect. Participants from the Homeless, Dominican and Chinese groups said providers were sensitive to the needs of their community. Most participants from all groups said that doctors were especially sensitive to asthma. They reported that in some clinics asthma patients are given priority and are seen first. For example: Homeless group participants said that at the Red Cross Shelter, their community’s needs were met since there was a clinic on site that they could use. Participants from the Chinese group said most doctors in the Charles B Wong Community Health Center were Chinese who understood the Chinese culture and the community’s needs. Participants who were dissatisfied with provider sensitivity Participants from the Middle Eastern, Far Rockaway, and Nassau groups said that their providers were not sensitive to the needs of their community. Participants from Far Rockaway said that the attitude of providers was “It does not matter how I talk to you, I will still get paid.” They said that when providers got “nasty,” clients also got nasty and providers should understand that “to get respect you have to give respect.” They felt that the staff were unfriendly and did not relate to the frustrations that existed in their community. Most respondents from Nassau County and the Middle Eastern Community said that they believed health care providers did not care about their community. They said that they acted respectfully towards health care providers for fear that if they did not, providers would retaliate by making it harder to access quality care. Participants’ suggestions to improve sensitivity of providers: > Respondents said that providers should be sensitive to the fact that the communities they served experienced a lot of stress. Many had difficult lives and occasionally acted out in clinics when they felt frustrated; providers should empathize with them and not attack them for that behavior. > All participants said cultural sensitivity training was needed for providers so that they could become more aware of the challenging issues faced by each community they served. Dissemination of Health Information All groups reported word of mouth as the most effective method of disseminating information about health care services. The Homeless community was the only one that reported word of mouth as not being effective in their community. Street outreach in communities was recommended by all groups as a way to improve outreach efforts. Below are the best methods for dissemination of information for each group: Homeless Women: Posters and fliers at hospitals, clinics, buses and welfare centers, advertisements sent with Medicaid mailings. Native American Women: The health coordinator on the reservation, fliers and posters at health clinic, mailings, outreach at the community center. Dominicans Women: Word of mouth, Spanish language commercials on Channel 47 and 41, posters on buses and trains in Spanish. Far Rockaway Women: Word of mouth, outreach tables at clinics, commercials on local radio and TV and The Wave (local newspaper). Middle Eastern Women: Mailings, recruitment at hospitals and clinics, word of mouth, posters in Arabic. African American Women (Nassau): Word of mouth, caseworkers, posters at the grocery stores and bus stops, and street outreach workers. Chinese Women: Word of mouth, Chinese news media, social worker at Charles B. Wong Health Center. Awareness, Access and Experience with Government Programs (PCAP, WIC, Public Assistance, Food Stamps, C/THP, CHPlus) Most participants in each group reported that they had heard of each of these programs. Participants satisfied with programs Homeless, Native American, Dominican, and Chinese groups reported that they knew how to access these programs and overall their experiences with these programs were positive. Those who had PCAP in all groups said that they had positive experience with the program because they were able to have health coverage even without immigration papers while pregnant, and also because the program was helpful after the pregnancy. They also added that it would be useful if it continued for a year after pregnancy. Most from Nassau County group said they liked WIC and heard about it as soon as they went for prenatal care. Participants dissatisfied with programs Participants from Far Rockaway, Middle East and Nassau overall were not clear on how these programs worked or how to access them. They also were the groups that were most dissatisfied with their experiences with these programs. Most participants in every group said that it was difficult to meet the eligibility requirements of governmental programs and they were unable to access services that they felt they deserved and should qualify for. A few respondents from Far Rockaway said that they had to lie on their applications in order to meet the eligibility requirements. Participants from Nassau and Middle Eastern groups said it was difficult to communicate through the phone with these programs. Participants complained of being put on hold for long periods of time. Language barriers created additional difficulty for non-English speaking participants who attempted to access programs on the phone. Many in the Far Rockaway and Nassau group also felt that workers in these programs were not helpful. Respondents stated that workers were frequently rude and sometimes ridiculed them with other workers. Access issues listed by community > Homeless respondents stated that once they entered a shelter their coverage changed and they had to change caseworkers. They also had to stand in a different line, which was usually longer than other lines. > Native American participants suggested that living expenses should also be considered in determining who qualifies for government programs. They indicated that since they lived in one of the most expensive communities on Long Island (Suffolk County), they should receive special consideration. They said that although they did not qualify for public assistance, they did not have enough income to pay for private insurance. > Many participants from Far Rockaway felt that parents under 21 years old should be able to access services on their own. They felt it was not fair that they were only allowed health coverage through their parents. They said that being parents made them independent and they should be allowed independent coverage. These participants added that it was unfair to have to take their parents to court in order to become an independent entity. > Another challenge to accessing these programs reported by participants from Far Rockaway was the high rate of illiteracy within their community. The paper work that needed to be filled out to get services was overwhelming and discouraged such people from trying to get services. They said people who could not read were embarrassed to say so. They said one on one support with a worker was necessary in such cases. > For the Middle Eastern and Dominican group, language was an obstacle in accessing these programs. Participants noted that in the Medicaid office no one spoke Arabic and communicating well without translators was difficult. English speaking Middle Eastern women stated that due to their strong accents they felt mocked by workers frequently asking them to repeat themselves. > For participants from the Middle Eastern and Dominican groups, immigration status was yet another barrier to accessing programs. Fearing deportation, people did not want to disclose information necessary to fill out the paper work. Impact of September 11, 2001 All participants, with the exception of the Middle Eastern community, reported that the events of September 11th had no impact on their ability to access health care. Middle Eastern participants overwhelmingly reported that they were scared to go to the hospital or clinics after September 11 due to the hostility expressed towards them by the general public. Participants indicated that the situation had improved and they no longer fear being attacked. Counseling services When asked about counseling services related to September 11th, the majority of participants reported not knowing about such services. Some in the Dominican group reported that they received prescription medication from their doctors for mental health. A few who knew people who had received counseling said that they found it helpful. All groups said that there was still a need for counseling around September 11th especially for their children who were still traumatized. Interestingly, each community reported that counseling services after September 11th were a greater need in their community. Many participants stated that depression and substance abuse were present in their communities and needed to be addressed. Participants from the Native American and Far Rockaway groups added that the physical isolation of their communities increased the prevalence of depression in their community. In the words of a Native American participant, “just from living down here you need counseling.” Participants from these groups said that they believed depression was a barrier in people accessing health services because they did not leave their homes. The Middle Eastern community said that their community suffered additional trauma following September 11th because of the attacks on their community. They said the impact of September 11 was still a cause of stress in their community and they felt that this was continuing to affect the health of their whole community. These women considered themselves Americans and felt stressed and depressed that their position in this country has become unstable. All groups said many in their communities would use a confidential and sensitive counseling program. They said that those who needed counseling might have too much pride to access services because of the negative stigma associated with mental illness. They suggested that educating the community about the benefits and uses of counseling could be very useful. Those from Nassau County suggested that group would decrease the feeling of being stigmatized. Participants from communities that did not speak English desired counseling services in their own language. Disaster Relief Medicaid Most participants reported knowing about the Disaster Relief Medicaid Plan. Chinese women said they were able to get Disaster Relief Medicaid and access health services. They said they liked it because it was easier to get and convenient for people to access health care. Participants from the Dominican and Middle Eastern group said that members of the community without papers were scared to enroll because they feared deportation. The Middle Eastern women added that they also feared being attacked or discriminated against in receiving services because of hostility towards the Middle Eastern community at that time. * Homeless Women * Native American Women * Dominican Women * Far Rockaway Women * Middle Eastern Women * Nassau County Women * Asian Women 1. Tell me about the places you go if you (and family) need to see a doctor or have a health problem. 2. Do you have any difficulty in getting to health care services? If so, what make it hard to get there? 3. Tell us about whether your health care providers meet your (and families) health needs: · Tell me what is good about your doctor or other health care provider · Tell me what could be different at the office or clinic etc. 4. Do you frequently visit the Doctor? (GYN, family planning, immunizations) 5. Do you take your infant or children to the doctor for well child check-ups and immunizations? 6. If you don’t have insurance, do you know how to access health insurance for you and your family? 7. What has been your experience with your current health plan? · Does it pay for everything you need? · Are you satisfied with your health plan? 8. What are the health concerns for your community? · How are they being addressed? · Do you believe that your ethnic group has special beliefs or specific needs that your doctor doesn’t address? 9. Are health care providers sensitive to the needs of your community? · Treated with respect? 10. How do you learn about health care services? (word of mouth, posters, etc.) · What do you think is a good way to reach your community about health care services? 11. Are you aware of PCAP, WIC, Public Assistance, food stamps, C/THP, CHPlus? · Do you know how to access these programs? · What has been your experience with these programs? Impact of September 11, 2001 1. What effect did the events of September 11th 2001 have on your access to healthcare services? 2. If you know people who got any counseling services after September 11th 2001, was it helpful? 3. Do you feel people still have the need for counseling? 4. Have you heard about the Disaster Relief Medicaid Plan? American Red Cross Family Shelter 515 West 41st Street NY, NY 10036 November 7, 2002, 1:2:30 PM Facilitator: Lensa Gelana, MPH Participant: 15 Population: Homeless 1. Participants reported that they went to hospitals in Brooklyn, Queens, Manhattan, and the Bronx. These included Metropolitan, Mount Sinai, St Luke’s Roosevelt, White Hall, North Central and Kings County. Some participants also said that they get care at a different hospital than their children. 2. Respondents said that being constantly on the move was one main issue that created difficulty in getting to health care services. Many also added that traveling with strollers posed a major challenge for them. 3. Most participants expressed concern over the lack of attention given to them and the competence of their health care providers. Words like “rushed, not thorough, did not answer questions” were used to express their interaction with providers. Parents were also concerned that their children’s health needs were not being met. One woman reported that her child was given the wrong medication and even when the medication was supposed to be the right one the child kept getting sicker and sicker. She said, “When you want a second opinion, they (providers) get upset.” Another woman reported that her child had been suffering from nosebleeds and although she kept going to the doctor, the nose bleeds never stopped. She planned to keep going until they find a solution for her. A third woman added that her doctor kept missing her child’s ear infection because they were not being thorough and kept rushing. Other participants said they liked their providers because they listened to them and once they found one they liked, they made every effort to stay with her/him. The majority of participants wanted something to be done about the long waiting periods before doctors saw patients. They said this was an especially relevant concern for women who were pregnant. One woman said that she had to wait for four hours in an examining room to be seen. When the doctor failed to show up, she left. Another woman said that she waited so long for her appointment that by the time she got to the doctor she was having small contractions. The doctor kept telling her that she should have eaten, and she had to remind the doctor that the reason she was hungry was that she had been waiting to be seen for so long. Suggestions given to improve health care experience: * Provide food at prenatal clinics where there was long waiting periods, especially since most women would not go out to get food for fear of missing their name being called. * Make an effort to see patients on time. * Occupy the time of people who are waiting by filling out necessary forms, taking temperature, pressure etc. * Have an area for children to play or have movies for them to watch so they don’t get upset and add to the stress of parents. 4. Participants visited the doctor from twice a year to once a month. Most said that they went to the doctor twice a month, another substantial group said they went two to three times a year since their kids did not get sick often. 5. All respondents said that they took their children to the doctor for well-child check ups and immunizations. 6. All participants, except for two, reported having health insurance. Those who did not have insurance said that they knew how to access health insurance. 7. When asked about their experiences with their current health plan, the majority said they wished to have their health plan include additional clinics and hospitals. Many said that they have either been turned away or their access to services was limited because their health plan was not accepted at the hospitals they went to. One woman said that while 8 months pregnant, she had to go to the emergency room. When she returned the next day to follow up, she was told that her plan, Health Care Plus, was not accepted by the hospital. She was in Brooklyn at the time and it would have been difficult and inconvenient for her to travel all the way to the Bronx to be seen by her regular doctor. One woman said she was turned away from an emergency room because her health plan was not accepted. Another woman said that although she wanted to change her plan, she was not able to because she would have had to leave a prenatal care doctor that she liked. Another concern expressed by participants was their experiences with refills. They reported that they ran out of prescriptions quickly and they had to make an appointment with their doctor to get another refill prescribed which they felt was time consuming. They said that if they were not able to get prescriptions refilled through their health insurance, they had to pay out of pocket. They also said that it was inconvenient to have to go to the original clinic to get refills. Overall, participants said they were satisfied with their health plans, especially with Medicaid. Some said they preferred Medicaid to other plans such as Aetna, HIP, and Blue Cross Blue Shield. 8. Participants identified asthma, AIDS, TB, syphilis and pink eye as the main health concerns of their community. They said that at The Red Cross Shelter, their community’s needs were met since there was a clinic on site that they could use. They felt that other shelters had problems with the diseases noted above because they were not treated on time and spread to others. 9. Participants said that doctors were especially sensitive to asthma. They indicated that in some clinics asthma patients were given priority and seen first. Respondents also reported that overall they felt respected by health care professionals. Some said that they acted respectfully towards health care providers for fear that if they did not, providers would retaliate by making it harder to get care on time. 10. Respondents said that posters and fliers at hospitals, clinics, buses, welfare centers were effective. Advertisements sent along with Medicaid mailings were also useful. Participants said that advertisements were “everywhere.” They said outreach efforts have worked and continuing along the same paths as the past would be effective. Participants noted that they rarely heard about health information through word-of-mouth. 11. Respondents said they have heard of all programs mentioned expect for the three women who had not heard of PCAP. They said that they knew how to access the programs and overall their experiences with the programs were positive. Participants’ only difficulty was that once they were in a shelter their coverage changed and they had to change caseworkers, and also had to stand in a different line, which tended to be longer. Impact of September 11, 2001 on health care access: 1. All participants said the events of September 11, 2001 did not have any impact on their access to health care services. 2. Most said they did not know anyone who received counseling. Few said they knew people who got counseling who were also in the building that day and they found it helpful. 3. Two women said they knew people who needed counseling because of the fears they developed after September 11th. 4. Most of the participants, except for one, had not heard about the Disaster Relief Medicaid Plan. Summary of Findings * This group interacted with many institutions that provide health care service throughout the five boroughs. * The challenge to access faced by this group stemmed mainly from their health plans not being accepted by the health care providers they interacted with or wanted to interact with. * Although the group preferred more time with health care providers, overall they felt that providers treated them with respect, and were sensitive to the needs of their community. * Long waiting times to be seen by doctors were mentioned as the major cause of dissatisfaction at health centers. * Overall, the group was aware of the different programs and services that targeted their community knew how to access them and had positive experiences with them. * Advertising campaigns for health services were effective in reaching this group. * The events of September 11, 2001 did not have a significant impact on this group. Suggestions to Improve Health Care Experience * Reduce waiting periods at clinics. * Make the experience of waiting more productive for both parents and their children. * Make food available at pre-natal clinic waiting rooms. * Expand health coverage plans to include larger provider networks. * Educate women about where their plans are and are not accepted and help them sign up with providers near their homes. * Improve prescription refill protocols to minimize inconvenience to women who are pregnant or have small children. * Provide on-site health care services to women in shelters because of their unique needs and ensure continuity of care with previous providers and case managers. Poospatuck Indian Reservation Community Center 151 Poospatuck Lane, P.O. Box 86, Mastic NY 11950 November 19, 2002, 12 pm Facilitator: Lensa Gelana, MPH Participant: 12 Population: Native American 1. Almost all respondents went to Shirley Health Center, in Shirley Long Island for care. One woman went to a provider in Stony Brooke. 2. Participants said the Shirley Health Clinic was near the reservation, “up the street” and all participants said that they had no problems getting to health care services. 3. All participants expressed that their health care providers met the health needs of their families. Some said if their needs were not met they would not bother to go to the health center. Respondents said they found the costs of the clinic affordable. They said they could be seen as walk-ins, which was also a benefit. Participants said the staff was friendly and the doctors were good. One woman said she liked her doctor because she advised her to stop smoking, was friendly and attentive. Another woman said she liked her provider because she was thorough and did not brush her off and made her feel like a person. Most said they did not like being shifted from doctor to doctor, some doctors overbooked and were not able to see their regular patients. They preferred to be seen by the same doctor who knew them and whom they knew. Long waits to see the doctor was the only issue that participants would like to see change at Shirley Health Clinic. 4. Participants visited the doctor from every two weeks to once or twice a year with most going about once a month. 5. Participants said they took their children to well-child check-ups and immunizations most of the time. 6. The majority of participants had health insurance. Those who did not have insurance said that they knew where to get care or they could ask the health coordinator who works at the Community Center for assistance. 7. Most participants said their health plan was satisfactory and it paid for the services they needed. Maria Chamarro, the Health Coordinator for the reservation, pointed out that although their health care was overall good, there was a lack of access to specialists such as dermatologists and respiratory specialists. It was difficult to get an appointment with them and they were usually located at a different site, usually at Stony Brooke, which for most was far and difficult to get to. Also, some specialists might not accept their health coverage adding to the difficulty of finding the care needed. Another major deficiency of the Indian Health Services plan, according to participants, was that it did not pay for in-patient care, and patients were expected to pay out of pocket. 8. Asthma, high blood pressure, diabetes and depression were identified as the specific health needs of their community. Participants felt that doctors were overall aware of their health needs. When probed further, respondents said their health care providers did not treat their health concerns as a community issue but addressed them individually. 9. Participants felt that they were seen more as an individual and not as a part of a community at the health center, which they preferred. They also said that they were treated with respect. 10. Respondents said they received most of their information about health care services through the health coordinator on the reservation. Fliers and posters at the clinic were also effective. Mailing information was a suggestion. Outreach at the clinics would be helpful since most people on the reservation went to the same clinic. Note: After a discussion about relevance of being seen as a part of a community, participants pointed out that the Shirley Health Clinic was not aware that most of the Poospatuck Community visited the clinic for care. The health coordinator mentioned that only 10 people from the reservation were documented in clinic records as having received services from the Shirley Health Clinic. This data was obviously wrong since as one woman stated, she had 10 children and her kids only would have filled the quota for the year. 11. Participants reported that they are aware of the programs mentioned and said that those who worked at these programs would “respect you if you respect them.” Some participants stated that they should qualify for these programs but did not because their incomes were over the limit by very negligible amounts such as $47.00. Respondents suggested that living expense should also be considered in determining who qualified for the programs. They said that since they lived in a community in Long Island, which was more expensive than other communities, they should get special consideration particularly since they did not make enough money to pay for private insurance. One woman said that Family Health Plus was not helpful because the income amount needed to qualify for it would also qualify a person for Medicaid, so it made better sense to get Medicaid. Another woman said that while she was waiting to switch to Medicaid because she lost her job and health plan, she had to be hospitalized. Since she made $80.00 dollars over the income limit, she did not qualify and she still had the unpaid bills from that visit. The woman finally did get the Suffolk Health Plan after 8 months of not having coverage. Suffolk Health Plan only allows the woman to access health services from only one specific clinic. Other than the Department of Social Services, all programs including WIC and Medicaid were located at the Shirley Clinic, which, participants said, made getting services and keeping appointments very convenient for them. Impact of September 11, 2001 on health services: 1. Participants reported that the events of September 11th had no impact on their ability to access health services. 2.Participants said that they were not aware of anyone who needed counseling. However, when asked if they knew where to go to get counseling if they needed it, most said no. Some respondents felt that counseling could have been useful and people may have used it had it been available. They also said counseling services outside of September 11 issues would be beneficial. One woman said, “Just from living down here you need counseling.” 3. Although some said that they did not believe in receiving counseling services, most participants said that counseling and case management services could be very useful in their community. 4. Most participants had not heard of the Disaster Relief Medicaid Plan. Discussion on outreach: The Health Coordinator, Maria Chamarro, said that about a year ago a meeting was held between the Suffolk County Department of Health and the chief of the reservation to address the health concerns of the community. Goals were set to address these needs including breast cancer health services through mammogram vans. These goals have not yet been implemented. The only outreach activity at the reservation was an HIV health educator who came periodically and also left pamphlets and condoms. The group said that it would also be helpful to have an educator teach the children about asthma including use of their pumps and the dangers of sharing pumps. Summary of Findings Poospatuck: * The group was generally satisfied with the health center they attended and with how they were treated by providers. * The major complaints about health plans were: 1. they did not cover in-patient costs and 2. some were difficult to qualify for although participants felt they were needed. * The group was not aware of the importance of being seen as part of a community in order to improve the quality of care they received. * The group was not aware that the clinic they attended was not sensitive to the needs of their community and the implications of this sensitivity to the community’s health. * Health services advertising campaigns were not as effective as they could be. * The one stop shopping model of the clinic and its welfare services were effective in meeting the needs of the community. * The community lacked access to counseling and social work services, which seem to be a great need for this community. Suggestions to improve experience with health care: * This community could benefit from outreach efforts and workshops addressing the specific health needs of the community. * The ties between the Shirley Health Clinic and the Poospatuck Community need to be strengthened to improve quality of service to this community. * Counseling services offered on site at the Shirley Health Clinic could address some of the mental health needs of the community * The waiting period at the clinics should be reduced. * Make specialized doctors accessible by having them work at the Shirley Health Clinic as needed to address the workload. * Follow up with the Health Coordinator to start implementing the goals set at the meeting held between the Health Department of Suffolk County and reservation representatives about a year ago. * Adjust income guidelines for health plans, including Family Health Plus, to reflect the local cost of living. Dominican Women Northern Manhattan Perinatal Partnership 127 W 127 Street, NY NY10027 November 22, 2002, 1 pm Facilitator: Jodyann Buckle M.A Participant: 9 Population: Dominican Women 1.Most participants reported that they attended the clinic at Morgan Presbyterian Hospital. Clinics attended by the remainder of participants included Jacobi Hospital, a Harlem Hospital clinic, Lincoln Hospital, and North Central Bronx Hospital. Participants said they went to the clinic or hospital nearest to their homes. 2. Most participants said that they did not have trouble accessing health care services although it was difficult to get around easily with strollers on public transportation. Many said that they selected providers near their homes for this reason. 3.Most participants stated that they were overall satisfied with their health care services. They said they liked their doctors because they took time with them, explained things to them and promptly referred them if necessary. They said they enjoyed feeling at home at the doctor’s office because they felt the providers knew and cared about their families. The few who reported not being satisfied with their providers said that their doctors rushed them and did not take time to consult with them. All participants said that long waiting times at clinics was a major cause of dissatisfaction. 4. Most participants said that they went to the doctor’s office about once a year for themselves and about three times a year for their children. 5. All participants reported that they take their children for well-child checkups and immunizations. 6. Everyone in the group reported that they had health coverage including Medicaid, Premier Health Plus, Metroplus and 1199. Most said that they knew how to access health insurance even if they did not have coverage. 7. Most participants reported that they were overall satisfied with their health plan and said it covered most of their health care needs. Those who were not satisfied were concerned about the inconveniences they experienced because of the restrictions of their health plan. For example: One woman reported that she took her child to the hospital for an asthma attack but found out that her provider had been switched to one who was far from her home. She said she was trying to get back to her more convenient provider. Another woman reported that because she has to see specialists she has to travel to different clinics in different boroughs, which made it difficult to keep all her appointments. 8. Participants identified obesity, high blood pressure, heart disease, diabetes, depression, HIV and STI as major health issues of their community. Issues the group suggested should be addressed were: * The traditional Dominican diet, which included fried pork skin, was not very healthy and the community should be educated about nutrition. * The Dominican cultural approach to sex was to not talk about it, which put young people at risk for HIV/STI infection and unwanted pregnancy. * Teenage pregnancy was an issue in the community. Adolescents hid their pregnancy from their family until they were well past their second trimester and did not get any pre-natal care until the end of the pregnancy. Even when families found out about a girl’s pregnancy, they did not usually take them to prenatal care but took care of them in “old custom” ways at home. * Therefore, the community needs to be educated about the importance of prenatal care because its necessity was not known in the Dominican community. * Use of home remedies was an integral part of the Dominican community. For most families, home remedies were preferred because they were cheaper than visiting the doctor and buying prescription medication. Lemon and Honey were used to treat all ailments and doctors needed to be aware of supplemental remedies being used. “Sancochito,” which was a combination of seven different oils, was another home remedy used often. * Immigration status was another concern in the Dominican community. When Dominicans without immigration papers went to the doctor they had to pay out of pocket which was very expensive and they could not always afford. As a result they preferred the use of home remedies. Those in the community with some immigration papers were afraid to apply to health insurance because they feared the information they gave might jeopardize their case with the Immigration and Naturalization Services. * Language barrier was the biggest concern of the Dominican community. Unless one had a family member who could translate, they might not know what the doctor was saying although they said they understood. Translators were necessary to make sure information was relayed effectively. * There was a need for more Spanish speaking patient advocates 9.Most participants reported that they felt respected by their health providers. Some said that they would stop going to a provider who did not treat them with respect. 10. Participants said word of mouth was the most effective way to learn about health services. They reported that Dominicans as a community liked to share information and talk to each other even when they did not know each other. Spanish commercials on Channel 47 and 41 were also said to be effective. Participants said that posters on buses and trains were useful although they were not effective if they were not in Spanish. Another useful method mentioned by participants was street outreach in the community, following the example of Health Plus, which effectively outreached in the community. Participants added that more outreach in Washington Heights, a Dominican Neighborhood, was needed. 11. Everyone in the group reported that they have heard of the different programs and knew how to access them. Some said there were case managers they go into their buildings with fliers. Those who had PCAP said that they had positive experience with the program because they were able to have health coverage even without immigration papers and also because the program was helpful after the pregnancy. Effects of September 11th, 2001 1. Most participants said that the events of September 11th had no impact on their ability to access health care. 2. Some participants said their doctors prescribed them medication to address mental health needs. Most said that they did not hear about counseling being offered in their community but they would have used it had it been available. 3. All participants believed counseling was needed in their community. They said that their children have been traumatized and needed support. They also said that the families of those who were illegal immigrants who died also are in need of counseling. Participants also said that the plane crash destined to the Dominican Republic soon after September 11th also affected them greatly. They felt that counseling was still necessary because many knew people who died in the crash. Aside from September 11 related counseling, most felt their community overall could greatly benefit from counseling services. They said adjusting to life in the US was a challenge to the whole community and that depression was a big concern that needed to be addressed. 4. All participants said they had heard of the Disaster Relief Medicaid Plan. They added that people from the community without papers were scared to enroll because they feared deportation. Summary of findings * The group reported having no trouble accessing health care services. * The group was generally satisfied with their health services. * Long waiting times at clinics was a major cause of dissatisfaction for the group. * Most participants reported that they were satisfied with their health plan and it did cover for most of their needs * Immigration status and language barrier problems were two major obstacles to accessing health care services in the Dominican community. * Most participants reported that they felt respected by their health providers. * Word of mouth was the most effective way to learn about health services in this community. * Everyone in the group reported that they have heard of the different public assistance programs and knew how to access them. * PCAP participants reported positive experience with the program. * September 11th had no impact on the ability of this group to access health care. * All participants believed counseling was a major need in their community. Suggestions to improve health care experiences * Educate community about the importance of prenatal care, nutrition, HIV/STI infection and unwanted pregnancy and use of home remedies. * Increase the number of Spanish speaking patient advocates available. * Increase health education and outreach efforts in Washington Heights, which is a Dominican neighborhood. * Provide more counseling services in the community. African American Women, Far Rockaway Queens Comprehensive Perinatal Council 106-46 Guy R. Brewer Blvd Jamaica Queens NY 11433 December 3, 2002, 1 pm Facilitator: Lensa Gelana, MPH Participant: 13 Population: Far Rockaway 1. Respondents reported that they visited Peninsula Hospital, Medport and Adabo clinics. Most said they preferred to go to clinics near their homes. 2. All participants said it was very difficult to travel with their children because they could not get on the bus with strollers. They said taking a cab was the most convenient way to travel with their children but they could not always afford it. 3. Many participants stated that they did not trust doctors to give them the right information and felt that doctors did not address their concerns. They said they were usually told that everything was fine, although sometimes doctors misdiagnosed ailments such as asthma or rashes. Some said they preferred to listen to their family whom they trust more. All participants said they wanted to have doctors who knew their history. They said they did not like changing doctors frequently as they were sometimes forced to do when their doctor was not in or when they could not attend the doctor’s clinic hours. Many said that there was age discrimination from providers and that they were not taken seriously because they were young parents. They felt that providers did not explain things to them or consult them about decisions that needed to be made. They said that if doctors perceived them as not knowing much, they disregarded them. A few of the participants said that they did not like that doctors brought in students to “practice” on them or their children without their permission. One woman said that after delivering her baby, the doctors left with her child and she was stressed because she did not know what was happening. She stated that the doctors should have consulted her and believed that they did not because she was a young mother. Most agreed that the hospitals called ACS on them unfairly. They said that they were young parents and may not always know what was best for their child but that did not mean that they did not care about their baby. They reported those who did abuse their children did not have ACS investigating them. They said that the hospital/clinic interacted with them in a hostile manner and providers were not compassionate. Participants who received services from Visiting Nurse Services (VNS) said they liked their program for pregnant and parenting teens. Some made use of the birth assistants who were available to the program and strongly recommended that others use them. They said it made a great difference in their experience because assistants were compassionate to teenagers. 4. About half of the participants said they went to the doctor about once every two months for themselves and their children’s appointments. 5. All respondents said that they made it to their children’s appointments. One woman said that the clinic sent her friendly reminders if she missed an appointment, which she found very useful. 6. Most participants said they knew how to access health coverage and if they didn’t they knew where to go and who to ask to find out. A few reported that they did not know how to get health coverage. 7. The majority of the participants said their health coverage did not pay for what they needed. Many said that what was covered was not explained to them and they had surprise bills they did not expect and some still owed money. For example, many said that they did not know Medicaid would not cover for their ambulance when they called for emergency. Participants also said they did not know that Medicaid was requiring that they enroll in an HMO plan and that if they didn’t they would pick their doctors for them. Some said they did not get the information in the mail. Others, on the other hand, said they heard about the changes at the clinic, some attended classes about the changes. 8. The group identified HIV, STI, asthma, anemia, depression and substance abuse as being the main health concerns of their community. Participants said that Far Rockaway was a very isolated community where there were pockets of people who were not reached by health outreach efforts and who did not visit hospitals or clinics. Most said that they believed there was a serious problem of depression because many in Far Rockaway did not leave their homes or the Far Rockaways. They said the problem of substance abuse was related to their isolation. Respondents said that even when there were health programs that came to their communities, most people did not participate and eventually the programs stopped coming. Many felt that their community was underserved and did not receive the same quality of health care as other communities in Brooklyn. 9. Participants reported that providers from outside their community were not sensitive. They said that even those from their own communities were not sensitive at the clinics they visited. They stated that the staff were unfriendly and did not relate to the frustrations that existed in their community. Respondents said that providers should be sensitive to the fact that the community in general suffers under a lot of stress, and many had difficult lives and may act out in clinics when they felt frustrated. They said providers should empathize with them and not attack them back. All participants said cultural sensitivity training was needed for the providers to increase their awareness of the challenging issues faced by those who live in Far Rockaway. Many saw the attitudes of providers as “It does not matter how I talk to you, I will still get paid.” They said that when providers got “nasty” clients also get nasty and providers should understand that “to get respect you have to give respect.” Overall, most participants said that they did not feel respected by the health care system and providers in Far Rockaway. 10. Respondents stated that word of mouth was the main way they heard about programs and services. They said outreach tables at clinics; commercials on local radio and TV and The Wave paper were also effective. They said posters might not be as effective because they were torn down as soon as they go up. Overall they felt that there was not enough outreach towards their community because people still did not know about what services were available for them. One woman said that she found out about the Visiting Nurse Services (VNS) program for adolescents when one staff member stopped her on the train to tell her about it. 11. All participants reported that they were aware of all programs. About half of the participants said they knew how to access these programs but had a difficult time accessing them because of eligibility requirements, which they did not meet. A few respondents said that they had to lie on their applications to get services because they needed them. Many participants stated that parents under 21 years old should be able to access their own services and they felt that it was not fair to be only covered through their parents. They said that even if they lived with parents that did not mean that they ate there or left their children there. They said it was unfair that to become a separate entity; they had to take their parents to court. Another half of the group was not clear on how these programs worked or how to access them. Another challenge to accessing these programs reported was the presence of illiteracy in the community. The paper work that needed to be filled out was overwhelming and discouraged such parents from trying to get services. They stated that such people were also embarrassed to say they could not read. They said one on one support with a worker was needed. Many in the group also felt that workers in these programs were rude and sometimes made fun of them with other workers. They said they did not like how they were treated when they went to receive services. Impact of September 11, 2001 1. All participants said that the events of September 11 had no impact on access to services in their community. 2. Participants said that they did not know people who received counseling. 3. All participants stated that counseling was a great need in their community, not only around the impact of September 11, but also to address the high rate of depression in the community. They said that those who need counseling may have too much pride to access it because of the negative stigma associated with counseling. They said many in the community would use a confidential and sensitive counseling program. They also suggested that educating the community about the benefits of counseling could be very useful. 4. Most participants have heard of the Disaster Relief Medicaid Plan. Summary of findings * Participants found it difficult to travel with their children to access services. * Many said they experienced age discrimination from providers. * Most participants said they knew how to access health coverage. * The majority of the participants said their health coverage did not pay for what they needed. * Many felt that their community was underserved and did not receive the same quality of health care as other communities in Brooklyn. * Overall, most participants said that they did not feel respected by the health care system and providers in Far Rockaway. * Participants stated that parents under 21 years old should be able to access their own services. * All participants said that counseling was a great need in their community. * Events of September 11 had not impact of access to services in their community. * Illiteracy was a barrier to accessing services in this community. Suggestions to improve health care experience * Availability of birth assistants was strongly recommended * The community needs more education about their health coverage * Address isolation of community and outreach to pockets of community who do not access health services. * Cultural sensitivity training is needed for the providers * Educate community about benefits of counseling and offer confidential counseling services. * Build better bridges between community and health care system. Middle Eastern Group Muslim American Society Community Center 1933 Bath Avenue, Brooklyn, NY December 17, 2002, 1 pm Facilitator: Lensa Gelana, MPH Participant: 16 Population: Middle Eastern 1. Most of the participants went to Lutheran Medical Center; others went to Victory Memorial Hospital, Coney Island Hospital and private doctors. 2. Most said they had to take the bus or walk to the hospital. They said traveling with the stroller was very difficult because they could not take the stroller on the bus. Participants said sometimes they had to walk to Lutheran Hospital and it was too cold and too far. Sometimes they had to take two buses. Overall, participants said hospitals were not very accessible to their community. 3. The majority of participants expressed dissatisfaction with Lutheran Hospital, which was the main hospital used by the community. They said the hospital was overcrowded, did not have enough doctors, and had very long waiting periods. They also reported they had to wait three or four months to be seen by a doctor. Some said even once they got an appointment, they were told that their case was not an emergency and were sent home with another appointment. Most participants reported that doctors were unfriendly, did not smile or speak to them and cut their visits short. They stated that their interaction with providers made it difficult trust the quality of care they received. Some said that going to the doctor was their last option and they tried to avoid it as much as possible. A woman said she had a miscarriage and was bleeding but the doctors took too long to see her, by then she had lost too much blood, had a light heart attack and had to be revived. Another woman said she was hospitalized and was screaming from pain and no one came to her aid the whole day. One woman whose son hurt his arm and was bleeding was taken to the emergency room at Lutheran Hospital. The family was told that unless the child has a fever he will not be seen, which upset the mother greatly. One woman stopped going to Lutheran after she had to wait 5 hours to be seen in the emergency room. After 5 hours, she was told to come back to see another doctor the next morning. One woman took her child to the doctor and the doctor from the door without examining her child told her that the child has a cold and prescribed antibiotics. After taking them, the child was still ill. The mother went to another doctor and he diagnosed her child with asthma, which her first doctor missed many times. 4. Most respondents reported that they went to the doctor for their children about two times a month. Those whose children had asthma visited the doctor more frequently. 5. All participants said they take their children for well-child checkups and immunization appointments. 6. Participants who did not have insurance said they did not have it because of their immigration status where they did not qualify for health insurance. Most participants without insurance said they had to pay out of pocket when they went to the doctor, which they could not afford. They said they try to avoid visiting the doctor as much as possible since it was too expensive. Those who did have immigration papers knew how to access health coverage. Their only complaint was that they had to wait too long for the insurance papers to be processed. 7. Most participants said that their insurance did not cover for the services they needed. They said they were forced to pay out of pocket for services and medication because Medicaid did not pay for the medication they needed. Participants also added that generic drugs did not work as well and they did not want Medicaid to give it to them. They also did not like Medicaid limiting their visits and number of surgeries they could have. Some participants did not know that they were expected to enroll with a managed care health plan along with Medicaid to improve their access to health services. Some said that when they were referred to a specialist such as a heart specialist, the person they went to did not take their insurance and they did not know where else to go. Changing their insurance was not useful because it took too long and during that time they would have no health coverage. Some said that although they were approved for Medicaid, they never received the card, which made it difficult to access services. Some never even got notified that they were approved until a long time later. Participants with High Blood Pressure and Diabetes who needed constant medication said when Medicaid expired and they needed to reapply, their coverage was terminated and they could not access the medication they needed to manage their chronic illness. They could not survive without the medication and had to pay out of pocket for very expensive medication. Some participants reported that there was confusion about the difference between Health Plus and Family Health Plus. They suggested that names of programs should be very different from each other. One woman said that sometimes when she goes to get her medication, her card did not work and she should not have access to her medication. Later, she was told that the computers failed which angered her. Another woman said that she had to be hospitalized on emergency and owed Coney Island Hospital money and continues to owe money to the hospital. She had planned to get Emergency Medicaid. The next time she went to the emergency room, the hospital refused to see her until she paid some of the money. She had to get money together and pay to be seen. One woman said she did not like United Health Plan because it did not cover all her x-rays and she had to pay out of pocket. Another woman and her children were in a car accident and they were taken to the hospital by ambulance. Her kids had Medicaid but she did not. She received a bill in the mail for $1000 and she had no money to pay for it. She still has not paid the bill and believes it was very unfair to be charged for services under these circumstances. A participant needed four operations on her teeth but because she was pregnant she was not able to have them. Once she had her baby, her PCAP ran out and she could not have the surgery. She was told she had to wait for two months for Medicaid, and three months for Family Health Plus, which did not help her. She said PCAP coverage for only two months after pregnancy was not enough. She said the plan should be in effect for at least one year after the baby was born since most mothers breastfeed during this time and could not take any medication for their other health needs. Another participant who was getting treatment for her knee had Medicaid but was told in the middle of her treatment that the insurance no longer covered her treatment. She said she had to discontinue treatment although her knee did not heal because she could not afford to pay out of pocket for the services. Another woman said medicine was too expensive and although the doctor said she needed to take it she did not because she could not afford it. 8. The group identified Hepatitis C, asthma, high blood pressure, and liver failure for Egyptian men as major health concerns in their community. Most participants said that doctors were only sensitive according to their insurance coverage. 9. Most participants said they felt respected by providers overall. 10. Participants reported that mailings, recruiting at hospitals and clinics, word of mouth were very effective methods of outreach into their community. They said posters were only effective if written in Arabic. 11. All participants said they have heard of all the programs. They reported that language barrier was an obstacle to accessing these programs. Participants said that in the Medicaid office no one spoke Arabic and communicating health needs without translators was difficult. When they called the Medicaid office on the phone, they were placed on hold for too long and were not given information about the status of their case. Participants stated it was a big problem for them to get to the city to a Medicaid office where there was an Arabic speaking worker. They said they needed someone who spoke Arabic among the staff of the Medicaid office in their community. Some participants also expressed frustration that they were not eligible to get these programs although they felt that they should be. A woman said she was waiting for Family Health Plus but since the processing time was very long, she was not able to get the medication she needed. She was still sick but has no insurance to cover her. Another woman whose child broke his arm was charged for the ambulance bill even though her child had Child Health Plus. She felt that the insurance should have covered for her emergency. She also later found out that Victory Memorial did not take CHPlus and was told that she should have taken her child to Lutheran or Coney Island. She said she still owed the hospital money she could not pay. One woman said that during her PCAP covered prenatal care she did not get the same quality of care as others who had other insurance and were covered for more sonograms to monitor the health of their baby. Her insurance limited the number of sonograms she could have. Another woman said her child’s fingers were cut of in an accident. She took her child to Victory Memorial and although her child had CHPlus she was told it did not cover for cosmetic surgery and that she had to pay for the surgery herself. She could not afford to pay but felt bad that her child was going to have to live with his injury. Impact of September 11, 2001 1. Some participants reported that they were scared to go to the hospital or clinics after September 11 because they were scared of attacks. One woman who had to go for an appointment said that the workers at the clinic treated her badly. Participants said that at present, they don’t fear being attacked and the situation has improved. 2. Many respondents said that they did not know counseling was available. Even if they did know, many would have been unwilling to get counseling in the beginning because they were afraid to leave the safety of their community. All participants said that their community needed counseling because of the stress of alienation and fear they felt. 3.All participants said that there was still a need for counseling in their community and they would be willing to get some if it was available in Arabic with someone they could relate to. They said that their community was just as traumatized by the event as any other community and they believed they suffered additional trauma because of the prejudicial attacks on their community. Some participants were personally insulted and others had kids who were physically attacked at school. Some were frustrated that after living in this country for over 20 years their rights as Americans could be questioned. Many said they felt stressed and depressed about their position in this country. They stated they were frustrated that they were being looked at as criminals and they wanted to be heard as a community. They said the impact of September 11 was a constant cause of stress in their community and was affecting the health of their whole community. 4. Some women in the group had Disaster Medicaid while it was still available. Others said they were afraid to access it due to fear of deportation. One woman said that she felt discriminated against because she received less services than others she knew and believed it was because she was a Muslim woman. Summary of Findings: * Most participants had difficulty traveling with children to health care facilities. * The majority of participants expressed dissatisfaction with their experiences at the hospitals they visited, specifically Lutheran Hospital. * Majority of participants were dissatisfied with their health coverage. * Immigration status was a major barrier to accessing health coverage. * Language barrier was an obstacle to accessing health services. * Most respondents with Medicaid were dissatisfied with their interaction with the Medicaid program and its coverage. * Participants stated that although they felt respected by providers, providers were not sensitive to the needs of their community. * The events of September 11 had a great impact on access to health care in this community. * Counseling was identified as a great need in this community. Suggestions to improve Health Care experience: * Decrease the waiting time to be seen by a doctor and between appointments. * Train providers to be friendly and allow more consultation time with doctors. * Make hospitals more accessible by providing special transportation for mothers. * Use Arabic translators to facilitate relationship between the community and health care institutions. * Outreach from health programs and services needed in this community. * More education is needed on how health insurance plans work. African American Women (Nassau County) Nassau County Health Department 26 Main Street, Hempstead NY 11550 December 19, 2002, 1:00 pm Facilitator: Lensa Gelana, MPH Participant: 15 Population: African American 1. Participants reported that they went to MCMC, 54 Main Street in Hempstead, Pediatric Mobile Truck, Hempstead Health, Uniondale Hospital and private doctors to receive health care. 2.The majority of participants said that it was difficult to travel with their baby because they needed help taking the stroller on the bus or train. Some participants said they had health plans that covered for cab services, such as Infinity Health Plan, which they found very helpful. They added that all plans should cover for cab services, especially for mothers with emergencies. Those whose insurance did not cover cab services said they were forced to use public transportation because they could not afford to pay out of pocket for cabs. 3. Overall, most participants said they were satisfied with the service they received. The respondents who liked their doctors stated they liked them because they took time with them, told them exactly what was wrong and how to address it, and connected them with referrals quickly. Participants who had access to home visit services found it beneficial. However, most did not know the service was available. Some participants said that their doctors have misdiagnosed their children’s illnesses. They said they had difficulty trusting what their doctors said because they did not take the time with them and rushed them out. The majority of participants said the waiting time at clinics was frustrating, especially for prenatal care. Some participants added that the doctors they liked have limited hours, which made it difficult to see them. They also suggested that clinics needed to be less crowded. They suggested play areas for the children with toys, not only videos, be available. 4. Most said they visited the doctor about two times a month for their children and themselves. One woman said she went to the doctor six times a month because of her child’s asthma condition. All respondents said they went to all of their children’s appointments. Some participants jokingly added that they knew ACS would come and knock on their door if they did not take their children for their appointments. Participants who did not have health coverage said they knew where to go or the actions they needed to take to access health coverage. Most participants said that their plans covered for what they needed. Some stated they did not like paying for prescriptions because they were too expensive and they could not afford them. One woman added she needed a credit card to afford her asthma medication. Respondents also said they did not like having to come in and see a doctor just to get prescriptions refilled. Some also said they did not like being limited on how many times they could go to the doctor. For those with chronic illness like asthma, they could not control when they needed to visit the doctor. Participants said health insurance programs needed to make it clear what was and was not covered. About half said they did not know what their plans covered or how they worked. Some said they found out too late that they were supposed to choose a provider, when they failed to select a plan, one was selected for them, which resulted in loosing a doctor that they liked, and they have been going to for a long time. Participants said asthma, HIV/AIDS, diabetes, sickle cell, breast cancer, high blood pressure, and substance abuse were major health concerns in their community. Most respondents said that they believed health care providers did not care about their community and just did their job. Many felt that their doctors were not sensitive to the needs of their community. Some said that clinics in their community were not clean enough. A woman said her child who had a cold was given asthma medication because the doctor assumed it was asthma because of the community the woman came from. Another woman said that her doctor told her to stay home or move to Colorado to improve her asthma. The woman could not afford to take either actions because she was the sole provider to her family and felt that the doctor was out of touch with her reality and not sensitive to her social or medical needs. Half of the participants said their services were “OK” while the other half said they were dissatisfied with their health care experiences. Overall, most participants said they felt that they were treated with respect. Many also said their doctors have known them for a long time. Participants said they heard about services through word of mouth, from their caseworker, posters at the grocery store and bus stops, and street outreach workers who enrolled people in programs. They said all these methods were effective. Most respondents, with the exception of two, had heard of the programs and knew how to access them. Most said they liked WIC and heard about it as soon as they went for prenatal care. Some said food stamps did not give them enough money. They also stated they had trouble with food stamp workers who were not helpful and were disrespectful, especially to those who were homeless in the group. Some said it was difficult to communicate through the phone with Department of Social Services staff. Some said they believed workers were rude to discourage people from using the services but actually make it harder to become independent because they did not get the support they needed to go to school. They suggested that the program should pay for daycare if a woman wanted to go to school. Impact of September 11, 2001 1. All respondents said that September 11th did not affect their ability to access health services. 2. Three respondents said they knew some people who went to counseling and they found it useful. 3. Most participants said that their children were traumatized and were still scared and needed counseling. They said the community also needed counseling outside of the issues of September 11. They said for adults, group counseling maybe preferable because people did not want to feel stigmatized. 4. Five participants said they did not hear about the Disaster Relief Medicaid Plan. Summary of findings * Participants said accessing health services with strollers was difficult. * Most participants said they were satisfied with the services they received. * The majority of participants said the waiting time at clinics was long and frustrating, especially for prenatal care. * Those without health coverage said they knew what actions to take to receive health coverage. * About half said they did not know what their health plans covered or how they worked. * Most participants expressed a positive feedback about the WIC program. * Most participants reported dissatisfaction with workers from the food stamp office and the Department of Social Services. * September 11th did not affect this community’s ability to access to health services. * The community stated counseling services outside of the issues of September 11th were necessary. Suggestions to improve experience of health care * Participants suggested that clinics needed to be less crowded. * A play area for the children with toys was recommended. * Health insurance programs needed to make their coverage policies clearer * All plans should cover for cab services, especially for mothers with emergencies. * The community needs to be educated about the benefits of counseling. * Home visit services should be available to more women. Asian American Women Charles B. Wong Community Health Center 268 Canal Street, NY NY 10013 December 20, 2002, 8AM Facilitator: Lensa Gelana, MPH Participant: 14 Population: Asian American (Translated from Chinese) 1. All participants said they visited Charles B. Wang Community Health Center (CBWCHC) for health services. One woman said she and her family have been using the services of CBWCHC for over ten years. 2. Most participants said they have no difficulty getting to health care services. Many said they lived in Chinatown and it was easy to get to the community health center. Two women said they lived in Brooklyn and it took them over an hour and sometimes longer to get to the center. 3. Most participants said that they were satisfied with the services they received at CBWCHC. They said the doctors at CBWCHC were patient, spent time with patients and gave detailed explanation. Most also said that they preferred to go to CBWCHC rather than a private doctor because doctors in private practice charged patients more and they couldn’t afford it while CBWCHC charges patients according to their income. They also said many private doctors did not take Medicaid. 4. Most of the women said that they rarely went to the doctor for themselves but took their children as needed. Those who were pregnant said they went more frequently. 5. All participants with children said they take their kids to the doctor for immunizations. One woman said that she could not afford to take her 5 year old to the doctor because he did not have health insurance. 6. Most participants said the social workers at CBWCHC helped them to apply for health insurance. Two women said they did not know how to access health insurance. Another woman said her husband took care of it. 7. Most of the women said they had Medicaid and were satisfied with its coverage of health services. Others said that they just started receiving Medicaid and will see if it covers their health care needs. Two women said they were applying for PCAP Medicaid and did not yet know what it covered. 8. TB was identified as the biggest concern in the community that needed to be addressed because it was contagious. Hypertension and Hepatitis B were also other health concerns identified by some in the group. Most participants, however, reported not being aware of the health needs of their community. Participants said their providers were sensitive to the needs of their community because most doctors in CBWCHC were Chinese who understood the Chinese culture and the community’s needs. Participants said that most of the health problems of their community were being addressed. 9. All participants said most health care providers were sensitive to the needs of the community and they were treated with respect. 10. Most of the participants said they learned about the health care services of CBWCHC by word of mouth, from Chinese news media and from their friends. 11. Twelve women among the 13 participants were aware of the PCAP program. All 13 participants were aware of the WIC program. Four among the 13 participants were aware of the public assistance program. Twelve women among the 13 participants were aware of the food stamps program. All 13 participants were aware of the C/THP, CHPlus program. Most also said that they knew how to access to PCAP and said it was easy to apply for it. A few said that it took too long to get the approval from programs and some were very difficult to get due to eligibility requirements. Impact of September 11, 2001 1. Most said that the events of September 11th did not have any impact on their ability to access health care. A few said that they were able to get the Disaster Relief Medicaid and access some services and that it was easier to access than other plans. 2. Most of the participants said they did not know anyone who received counseling. Two women said they knew people who had received counseling and who found it helpful. 3. All participants said counseling was still a need in their community and that there are some people who still suffered from the event. 4. All participants said they have heard about the Disaster Relief Medicaid Plan Summary of Findings * Most participants said they have no difficulty getting to health care services and were satisfied with the services they received. * Participants said most health care providers were sensitive to the needs of the community and they were treated with respect. * Most said they were satisfied with their health coverage. * Participants said it took too long to get the approval from programs and some were very difficult to access due to eligibility requirements. * Most said that the events of September 11th did not have any impact on their ability to access health care. * Most liked PCAP because it was easy to apply for and access. Suggestions to improve health care experiences * Adjust eligibility requirements for programs in order to allow more people who need the services to enroll. Response from participants to the Focus Groups was overwhelmingly positive. Most participants said that the focus group’s goals were clearly defined and the location suitable and comfortable. Many participants also said that the group not only met but also exceeded their expectations for giving input. Many stated the focus group allowed them to gather new information and share their knowledge. They also said that being able to share what they thought about the health care system was empowering. Examples of what participants said were: It was “very helpful to help communities know their rights and duties” (Middle Eastern) The positive aspect of the group was “they wanted to hear what we said” (Dominican) The positive aspect of the group was “How I was being treated as health-wise” (Nassau) “I was able to say what I was feeling” “I was able to voice my opinion” (Far Rockaway) The positive aspect of the group was “the chance to state your opinions” (Red Cross) “The discussion was very likeable and understandable, learned things I didn’t know in health care” (Poospatuck) Each group asked Focus Group staff if they were going to return for further discussions regarding health care issues. All participants stated that groups where women shared information with each other and discussed different issues related to health care would be very beneficial. 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