Family Members – Island, Skagit and Whatcom Counties

A review of  25 surveys with comments pertaining to barriers to good medical treatment revealed they could be placed into several groups.  Some of the comments addressed more than one issue.  The groups listed below are areas of general concern.  The statements are direct quotes or complied statements from the comments.  They are representative of the comments in the group.

The number before each subject or group indicates the total number of comments referring to that concern.

I

S

W

Counties: I = Island , S = Skagit , W=Whatcom

0

1

0

Medical Records: “ There is a need to prepare an ongoing summary to take to each specialist or school.  Maintaining current care requires knowledge of past summarized records. This is never easy!”

1

0

1

Role of Advocates/Caregivers:  “The health care provider must talk with parents and pick their brains for information.  Let parents know what is going on.  Most adult patients will agree to anything you say. “, ”Health care providers must always double check with the parents or caregiver.”

0

0

0

0

0

0

0

1

0

2

2

2

Locating health care providers who accept Medicaid coupons etc. 

Locating dentists who accept Medicaid coupons etc.:  “Need dental very bad.  No one will take Medicaid card.  Maybe one day per week, dentist will expect special needs people only-- or a regular day each month.”

Rate paid: “Restructure Medicaid payments so doctors will actually take patients using it.  I don’t blame them, when they get $19 for a $67 bill.”

Use and processing of Medicaid coupons and health insurance: “It would help if you receive medical coupons you should also receive something telling what is covered e.g. physical exams, mammograms, pap smears etc. Are they covered or not?”  “Managed health care is a mess.”

0

0

3

Physicians and other medical personnel – education to understand diagnosis and treatment:  “Doctors do not stay current and are not willing to experiment or try new things.”  “Primary care providers must be better trained in recognizing developmental disabilities and must refer patients to an appropriate specialist. Early diagnosis is very important.”  “Help providers with training to better understand their patients.”  “As parents we have been frustrated by the lack of education for professionals regarding autism, PPD and other related disabilities.”

2

0

4

0

1

2

All Health Care Providers/Office Staff – Communication Skills: “Doctors, therapists, and nurses need to talk to the patient first, not the caregiver.”, “Parents need someone who will listen and have an open mind to learn about a particular problem.”,  “Patience and listening not only to the patients but also to their caregivers/parents.”,  “improvement in MD explanation to get better understanding of diagnosis.”

0

0

4

Caregivers/Advocates: “There is a need for ongoing training for the specialized care required by individuals with mobility issues.”,  “Need ongoing training to better understand and serve clients.”

0

0

0

0

0

1

0

0

0

0

0

1

2

1

1

0

1

1

“Need a list of physicians/Specialists willing to accept DD patients and indicate those accepting Medicaid coupons.”  “Hard to find an eye doctor.”

“Continuing care with one medical provider is important.”

“Need to increase the use of consultants by primary care provider e.g. pharmacist,  mental health specialist, etc.”

“Need team approach/better coordination of health care providers especially primary care provider and mental health specialist.”

“Need more skilled doctors who know more about the various types of DD.”

“Finding mental health providers, behavioral support and understanding is a problem.”

0

0

1

Waiting too long and time spent with the doctor:  “Don’t make them wait over 10 minutes for an appointment.  Usually negative behaviors escalate rapidly after that and everyone’s anxiety increases.”  “Waiting one(1) hour in the waiting room and getting 10 minutes with the doctor!!”

0

0

2

Long distance travel:  “We need to travel 60 minutes(11 times this year) to receive the best neurological care available.”

0

0

2

Getting excellent care

Family Members – Snohomish, Spokane and King Counties

A review of 66 surveys with  comments pertaining to barriers to good medical treatment revealed they could be placed into several groups.  Some of the comments addressed more than one issue. The groups listed below are areas of general concern. The statements are direct quotes or compiled statements from the comments.  They are representative of the comments in the group.

The number before each subject or group indicates the total number of comments referring to that concern.

Sn

Sp

Ki

Counties:  Sn = Snohomish,  Sp = Spokane,  Ki = King

1

0

3

Medical Records:  “There is a need for a concise medical history, easily forwarded to a new doctor or referral specialist including past and current medications and their outcome.”,  “ A thorough investigation of drug interactions is a necessity.”,   “The Medicaid Personal Care Plan should be sent to the Dr. ahead of time so he can see what special things are done for the patient.”,  “Make sure that med. records are updated on all aspects of the individual’s life that could significantly impact health.”

1

0

6

Role of Advocates/Caregivers:  “The advocate must communicate with the Dr. and explain what the Dr. says and means. The advocate should prepare a list of things the Dr. should know and check.”,   “Picture books for non-verbal people are helpful.”,  “A responsible advocate who knows the patient well can help prevent their being over-medicated and developing too many drug reactions.  Also the advocate can help prevent the patient from receiving treatments not covered by Medicaid\ Medicare.”,   “Advocates/caregivers could ask the Dr’s office to send reminders for routine checkups.”

4

1

1

2

0

1

0

0

0

0

4

2

1

2

1

Locating health care providers who accept  Medicaid coupons is difficult. 

Locating dentists who accept Medicaid coupons is difficult.

Rate paid to health  providers who accept Medicaid coupons are too low.

Use and processing of Medicaid coupons and health insurance.

Funding for OT, PT and 2^nd opinions.

1

0

7

Physicians and other medical personnel – education to understand diagnosis and treatment: “Very specific training(in med school and post internship) in treating patients with DD.”  .”  “Education about Fetal Drug/Alcohol Syndrome and its effect on the patients.”

“Develop better understanding of the disabled patients within psychological areas-treat them as patients instead of specimens.”, “More knowledge by health care providers on topics of aging issues.”, “It is important for physicians to understand and respond to the social and emotional aspects of treating patients with DD as well as their dependence on others  to communicate, follow through on treatment, and participate in their care.”

1

2

1

All Health Care Providers/Office Staff - Education to increase sensitivity and for patient and family: “Listen to what the “mother” is telling you.  She actually knows what she is talking about!”,  “Change in attitude of health care providers which shows they value people with disabilities and believe they are entitled to the same type of care as everyone else.”,  “Realize that parents know more about their children then anyone else and acknowledge it. Many disabled people are scared of new experiences and a medical exams, tests, etc.  Health care providers should be sensitive to that, take time with patients and families."

2

0

5

All Health Care Providers/Office Staff – Communication Skills:  “Education to increase communication skills of health care providers with patient and advocate.”,  “Not too many directions or questions too fast.”  “It is important for physicians to understand and respond to the social and emotional aspects of treating patients with DD as well  as their dependence on others often to communicate, follow through on treatment and participate in their care:”

2

1

2

Caregivers/advocates/Parents  “must learn to advocate for their disabled children and work well within the system.”,  “A class on “when to see the Dr. would be helpful”. “Educate parents to advocate for their young children with disabilities and learn to work well within the system.”,  “training for better nail care”,  “Talk to caregivers about outings in lieu of chemical restraints.  Teach them about exercise, vitamin-mineral formulas, good diet and good cooking.”, “Need more basic knowledge of hygiene and diet, plus some therapy.”

0

0

1

0

0

1

0

0

0

0

1

1

3

5

1

1

1

0

“Need for a list of physicians/consultants willing to accept DD patients.”

“Continuing care with one medical provider is important.”

“Need to increase use of consultants by primary care providers e.g.  pharmacist consultants,  mental health specialist etc.”

“Need team approach/better coordination of health care providers especially primary care providers and mental health specialists.”

“Need more skilled doctors who know more about the various types of DD.”

“Finding mental health providers, behavioral support and understanding is a problem.”

Community Resources/Parent Networking

1

0

1

“Need a reference list of community resources for people with DD.
Improve networking of parent/guardians.”

1

0

1

“Need waiting room with room for wheelchair and convenient large doors.”,   “Exam rooms are  too small to accommodate wheelchairs.”,   “Bath rooms are not wheelchair accessible.”

Sn

Sp

Ki

Counties:  Sn = Snohomish,  Sp = Spokane,  Ki = King

0

1

0

Waiting  time too long “Waiting in exam rooms is often a challenge to the DD person’s safety.”

1

0

1

Transportation to health care appointments and pharmacy are often a problem.

3

1

3

Getting excellent care.  “No medical problems, good doctors, capable and caring.”

2

0

0

Washington State DD system  of evaluation using IQ in order to get benefits.

1

2

3

Time spent with Patient : “Schedule a little extra time for their appointments, it will probably take longer to decipher exactly how they are feeling.“

Service Providers  -  Regions 2 and 4

A review of 26 comments pertaining to barriers to good medical treatment revealed they could be placed into groups.  Some of the comments addressed more than one issue.  The groups listed below are areas of general concern.  The statements are direct quotes or complied statements from the comments.  They are representative of the comments in the group.

The number before each subject or group of comments  indicate the total number of comments referring to that concern for either Region 2 or 4.

     2     

     4     

2 = Region 2       4 = Region 4

2

0

Medical Records:  “Residential staff must keep complete records and provide accurate information to doctors.”

1

5

Locating health care providers who accept Medicaid coupons is difficult:  “Being rural we sometimes have to travel out of town for basic needs(dentist, allergist, neurologist)”,  “Supply enthusiastic medical care providers(who take medical coupons) with some kind of acknowledgement or benefit. It may encourage others to follow and reach out further to include persons with DD.”, “Payment so the patient can receive a longer time with the doctor.”  The State needs to pay a higher rate of reimbursement to providers.”

3

3

Medical Personnel (Health Care Providers) – education to understand diagnosis and treatment: “ Physicians should have a basic understanding of disabilities and basic psychotropic medications.”,   “It is difficult for physicians to identify medical problems that may exhibit themselves behaviorally, e.g. hitting oneself, etc.”,  “More knowledge by health care providers on topics of aging issues. “  “More training for doctors on DD issues in general, including informed consent issues. “,  “Need physicians who will rule out medical causes before assuming it is a disability issue.”

  0

  4

Health Care Providers – communication skills: “Talk to the patient as much as possible to involve them in their care, defer to other care providers when necessary.”  “Need to provide better explanation of medications.”,  “Picture books could be used for non-verbal people.”, “Doctors often don’t understand that we need written documentation of over-the-counter or discounted medicine.”

  1

  1

  0

  1

“Continuing care with one medical provider is important.”

Team Approach/Better Care Coordination:  “”Better Coordination among physicians, especially for those with epilepsy and those with a dual diagnosis (MR and mental illness.)”

  2

  0

Interpreters:  “Availability of sign language interpreter for patients who are deaf. Physicians willingness to pay for interpreter for patients on Medicare.”, ” Medical Assistance Administration needs to pay travel time and mileage to sign language interpreter in rural area because of the travel involved in providing interpretation.”

Family Practice Medicine Physicians – Washington State

A review of 110 surveys with  comments pertaining to barriers to good medical treatment revealed they could be placed into several groups.  Some of the comments addressed more than one issue. The groups listed below are areas of general concern. The statements are direct quotes or  compiled statements from the comments.  They are representative of the comments in the group.

The number before each subject or group indicates the total number of comments referring to that concern.

E

W

E = Eastern Washington,   W = Western Washington

14

15

Medical History:  “Need a summary of the medical history of known medical problems, allergies, surgeries, medical problems of family origins, medication history including reactions  and current medications. Ideally the history would include MR-IQ, functional abilities, living situations and current support. Record transfers need to be improved, perhaps by using standardized transfer forms for all patients with disabilities to include H & P, meds, PMHX, etc.”

22

32

Advocate:  “Need a caring, knowledgeable advocate(caregiver, family member, case worker) to accompany patient  to facilitate the  medical encounter including communicating current concerns and relay reliable observations. It is very important for the advocate to supply updates of the medical history, complications and current medications.”,    “The advocate must ensure that diagnostic tests are completed and all specialists and follow-up visits are attended.”,   “Ultimately the care, skill and concern of the daily caregiver/advocate are the most important factors in following the treatment plan.” (“Informed decision-making and compliance are big problems.”)

16

8

Funding: “This population of patients require additional time and have a higher no-show rate.”,   “The government funding must be at a reasonable rate to reimburse for providing service.”

5

4

Medical Personnel: “Education should begin at the undergraduate level(med school, nursing school, pt/ot etc.)”,   “For practicing physicians a panel of adults or families of adults with DD could provide us with suggestions on what they have valued of those providers who do things right.”

E

W

E = Eastern Washington,   W = Western Washington

1

0

7

2

4

2

Consultants: “It would be helpful to have a list of consultants who specialize in these cases and could be available by phone.”

Team approach/coordination of health care providers:  “There should be better communication between health care providers e.g. RSN, PCP’s, MH providers, OT/PT etc. Also need better communication with case managers and caregivers.”

Other Services: “There should be references available regarding medical and social services in the local and regional area and how to access them.”,   “References should include social programs available in the area.”

6

2

Consent for Treatment:

Guardianship:“There is sometimes an absence of competence to consent to treat and no competent guardianship.”

ID and abilities:  “It would be helpful to have a way to make known the diagnosis and level of comprehension and other abilities(without discrimination), status of guardianship etc. so that “informed-consent to treat” can easily be determined. e.g. med ID bracelet, med ID card or strap on it.”

Family members: “Sometimes there are intrusive “family members” trying to dictate from long distances while they have little idea of what is going on with the patient.”

Physician Assistants – Washington State

A review of 15 comments pertaining to barriers to good medical treatment revealed they could be placed into  groups.  Some of the comments addressed more than one issue.  The groups listed below are areas of general concern.  The statements are direct quotes or complied statements from the comments.  They are representative of the comments in the group.

The number before each subject or group indicates the total number of comments referring to that concern.

C

R

C = Urban/suburban/city;   R = town/rural

2

1

Medical Records:  “On initial visit have all medical history and meds.”

0

6

Role of Advocates/Caregivers:

“The  Patient  should be accompanied by someone with good knowledge of patient, diagnosis, meds, habits etc. and someone with some degree of medical familiarity.” “Advocate should make sure that clothing worn makes exam easier e.g. shirt, top with bottoms).”,  Advocate should promote a good shower or bath prior to visit. Patient hygiene is sometimes a barrier to better care.”, “Caregivers should bring something that amuses the patient i.e. books, snacks, toys etc. because of frequent waiting decreases patient cooperation.” “All need to have patience with us too!”

2

0

Finances:

“Increase Medicaid reimbursement rates”,  “The time required to provide medical care to individuals with DD is 2-3X that of non-DD population.”,

“It is a good idea to intentionally schedule a longer appointment i.e. 30 min. instead of 15 min., because exam, history etc. takes longer.  Address 2-3 problems at a time to be sure dictation and charge is adequate.”

1

0

0

1

 “We need information  on typical physical and behavior problems  that occur with aging adults in this population.”

 “Front office staff  need more education to deal with special patients.”

1

0

0

1

“There should be State supported centers for providing primary care and coordinating specialty care for individuals with DD.”,

 “Coordination of information with other facilities and providers can be very challenging.”

Nurse Practitioners – Washington State

A review of the 79 survey comments pertaining to the barriers to good medical treatment revealed they could be placed in the following groups.  Some of the comments addressed more than one issue.

The following statements are direct quotes or compiled statements from various comments on the topic. They represent the group of comments.

E

W

E = Eastern Washington,  W = Western Washington

11

12

Medical History/Medical Records:  “A comprehensive, but concise history should include known medical problems, allergies, surgeries, medical history including reactions and current medication.  Written updates should accompany patient on each visit.  The history should include functional abilities and full social history including living situation and current support.”

13

30

Role of the Advocate/Caregiver:  “When making an appointment advocate should explain the extent of disability so that staff schedules extra time for the appointment.”,   “A knowledgeable advocate(caregiver, family member, case worker) should  accompany the patient  to facilitate the  medical encounter including communicating current concerns and relay reliable observations.”,  “It is very important for the advocate to supply updates of the medical history, complications and current medications.”,  “The advocate must ensure that diagnostic tests are completed and all specialists and follow-up visits are attended.”  “Caregivers/families provide an important role in disease prevention and implementation of the treatment plan.”,

“An advocate and the medical records should explain the patient’s ability to comprehend the nature of the illness, whether he/she can make medical decisions independently  (i.e. give informed consent) and understand instructions for treatment plan.”

4

3

Funding:  “Medicaid now pays $21 per RVV.  This is a DECREASE of $8 over the last 10 years.  The payment makes it economically unfeasible to see these patients.”, These patients take a lot more time with education and reassurance. If the reimbursement was increased for this increased cost of care it would help increase the number willing to provide care to these clients.”

1

5

For Medical Professional:  “Need education during graduate work and post-graduate regarding special problems often associated with the various populations including those with dual diagnosis.”

E

W

E = Eastern Washington,  W = Western Washington

4

3

3

3

4

2

1

6

“Continuing care with one primary medical provider is important.”, “Multiple providers=disaster.”

“Team approach/coordination of health care providers:  e.g. primary care physician, mental health professionals etc.”

Other resources: “References of community resources(including social) for patient and families.”, “Need more resources in the community, i.e. therapists or other specialists who have advanced training specially with clients with DD”, “Increase use of special services provided at Lakeland Village – dental,  nursing, training.”

1

4

“Without input from an advocate or thorough history, it is almost impossible to ascertain that informed consent can be obtained.”

Occupational Therapists – Washington State

A review of 16 comments pertaining to barriers to good medical treatment revealed they could be placed into groups.  Some of the comments addressed more than one issue.  The groups listed below are areas of general concern.  The statements are direct quotes or complied statements from the comments.  They are representative of the comments in the group.

The number before each subject or group indicates the total number of comments referring to that concern.

1

Medical Records:  “It is important to know what developmental stage they are at which may explain their behavior, and treat accordingly.”

3

Role of Advocate/Caregiver: “Always have a caregiver present to calm client and provide pertinent information regarding care, communication, changes in health, etc.”, “Support systems are extremely important.”

2

Finances: “The state funding for day-to-day care is more than adequate, but money for DME, especially wheelchairs, lap trays, etc are way too difficult to justify.”,  “Need better reimbursement for wellness services.”

2

Medical Personnel - Education to understand diagnosis and treatment:  “More trained medical staff availability especially in clinics in outer areas e.g. Everett, Woodinville, etc.  CHDD is great for pediatric care.  Too bad there’s no similar clinic or resource for adults with MR.”, “Once the patient can walk, etc., we think they are done with therapy.  Classes should cover things to consider, besides the obvious physical elements.”

2

Specialists/Consultants: “There isn’t a good place to get information and support.  State facilities used to provide some of this.”,  “Too bad there isn’t a clinic or resource similar to CHDD for adults with MR.”