Save Fircrest – Essential Supports

A bill has been passed to the Senate Floor to vote on closure of Fircrest School – one of our states Residential Habilitation Centers (RHCs).  The RHC houses two critical communities of care – a Skilled Nursing Facility (SNF) and an Intermediate Care Facility (ICF).

It is a fact that there does need to be some capital improvement to the facilities to provide a safe environment for the residents and this is why we support the Fircrest Master Plan Fircrest Master Plan A-2

The campus has been neglected in the capital budgets for years and this is one reason why there is a large dollar sign to this project.  When buildings are neglected, they deteriorate and become unsafe for residents.  This is the situation we face now.

This does not mean that the land should be sold and the residents forced from their homes and community.  It does provide opportunity to change and to make needed improvements and to re-access the needs.

These are the opportunities that we support:

Fircrest Master Plan Alternative A-2

Federally Qualified Healthcare Center with oversight provided by the Department of Health for Fircrest residents and adult residents in the state who live with intellectual and developmental disabilities.

Collaboration with the University of Washington, Center on Human Development and Disabilities to provide specialized and comprehensive healthcare to community members.  This collaboration would also provide training for students in the healthcare professions.

Opportunities for improvement are not an option if 2SSB 5594 passes.  This bill seeks to close Fircrest and deny current and future residents access to the necessary supports.

We need to defeat 2SSB 5594 to protect out most vulnerable citizens.  Tell your Senator to Vote NO on 2SSB 5594.

 

Who Watches the Watchman?

When allegations are reported and investigated – what happens if the investigators are actually part of the group the allegations are against?  Who provides an independent review of the allegations if the investigative agency can not be objective and actually do a real investigation?

These are questions I have regarding allegations of medical/nursing neglect and abuse  in the treatment of my son at the state operated intermediate care facility where he lived for 5 years.  The agency which does the investigation is the agency which runs the facility.  Unfortunately, even though the allegations are all medical and nursing care issues, the investigator did not have one healthcare provider review the allegations, documents or look into the fact that policies are outdated or do not meet the minimum standard of care.

But these “experts” have decided that the allegations are unfounded based on interviews with agency staff (non-healthcare) and administration.

We hear that the ICF/ID provides “comprehensive care” including healthcare and that there is oversight to ensure the care is being provided. Maybe in doing random surveys and looking at random samples, it may appear that the care is being provided.  Also in those surveys they do not look at the quality of healthcare or if the healthcare meets the community standard of care.  They seem to check that the providers have current licenses to practice their profession.  I think that we all know that having a license is not the same as providing quality care.

In my attempts to have an objective investigation I have contacted several other agencies in the state, including the Department of Health, and have gotten nowhere.  They all point to the Department of Social and Health Services as the agency providing oversight of the care.  Even though the ICF/ID is a medical facility by federal definition, our state defines it as a long term care facility yet the Long Term Care Ombudsman does not consider it a long term care facility and is of no help.

Clearly there are issues of neglect and abuse – any sane person could look at the records and documents and make that conclusion – for some reason though the Department of Social and Health Services and their investigative team has chosen to continue this neglect by failing to see the obvious and make corrections.

The issues fall into various categories of medical malpractice, medical neglect, restraints without consents, multiple injuries including fractures, false documentation of over 8 medications for over 2 years, failure to communicate with guardian regarding psychotropic medication changes, failure to provide prescribed medical treatments and transport to medical treatment center for prescribed treatments, applying splint to wrong foot, applying splint over shoe rather than inside shoe and failure to protect from client-to-client abuse are just a few of the allegations.  Maybe some of the issues actually fall into criminal categories.

Certainly in my mind the lack of ability of the investigators and the DSHS administration to do an objective and fact finding investigation is criminal.

Does one need to file a lawsuit to get anything done about this?

 

 

Not Just the Next Empty Bed

Recently we moved our son from the intermediate care facility to a home in the community under a supported living arrangement.  It was a difficult decision to make given all the research that I have done regarding care and oversight.  Many people wrote to me telling me of the terrible decision I was making and with horror stories of things that had gone wrong in the community.  I was well aware of many of these issues and still am aware of the lack of choice and quality of care that is offered in many settings.  I am aware of the cost issues and the cost-shifting that occurs making it appear that care in the community setting for those with complex care needs is less than the cost of care in the ICF/ID.

But, there were some circumstances that necessitated this move – a move that we thought we would not be making for a long time – namely that the ICF/ID was not able to provide the prescribed medical and nursing care that my son needed and his health was in danger.  There had been charges of medical/nursing neglect, many medication errors, and other issues related to personal and healthcare concerns.  The ICF/ID healthcare providers refused to follow the prescribed treatments of my son’s medical specialists and I was forbidden to teach nursing or personal care staff how to administer special medications or how to apply his splints correctly.  My hands were tied  due to the inability of the facility to acknowledge problems – not one specific problem but many.  I needed to visit several times a week in order to do his nursing care while at the same time being told that my visits were doing him a disservice.

But, my son had one option in this that most other people do not have – the option of CHOICE.

While on the wait list for the Roads to Community Living grant I was able to try to maintain my son’s health until we were able to choose a home that would work for him.  We had specific criteria – number one being that he needed to remain in our local community, the one in which he grew up and in which the ICF/ID was also in.

Of course, the supported living agency had to choose my son first before he could choose them and that took over a year and probably 8 rejections from local agencies.  When Alpha Supported Living Agency said they could support him, it then took time to hire and train staff and planning for which house would work best for him given the mix of the residents.

One of the major reasons that my son had this choice was due to the fact that he had continued to live in our local community and we involved natural supports to help with his care and community integration. He did not have to take the “next empty bed” as his choice for this move (that was how he got into the ICF/ID to begin with)

We are so thankful for this opportunity and my son’s health has greatly improved since his move and he has blossomed in many other areas too.

It is my assumption that many problems that arise from community residential services is that “the next empty bed” is the only choice available.  This is not a system which supports person-centered choice or real community.

There needs to be changes and more alternatives for true choice – from congregate, campus based care to individual homes – as long as the person is appropriately supported one can have a very meaningful life. Many times this takes much collaboration and team effort and adequate funding to support – but it can be done.

Please check out The Autism Housing Network for and ideas on how to increase choice and alternatives for adults with intellectual disabilities.

Disability Rights Washington has filed a lawsuit against Washington State Department of Social and Health Services and the Washington State Health Care Authority to help speed up transition and provide supports in the community.  My son is a member of this class-action lawsuit although I was not aware of it until it was made public this week.

Letter from DRW to DSHS and HCA

DSHS and HCA response letter

“The Last of the Institutions” Part 8 – Shawn’s Story

I have been following this series by Susannah Frame, Investigator from King 5 News in Seattle.  “The Last of the Institutions – Shawn’s Story:  From life in an institution to a home of his own” aired this past week.

Shawn Fanning – institution to community

Below is one of the comments that I wrote on King 5 comments regarding this story.  I will be following it closely and also writing about my own son’s transition from the same campus community to a home in our community.  Our son’s campus community (the same one that Shawn lived in) is in our community of origin and the same community in which my son has lived his entire life.  His new home is also in “our community” not “The Community” and this is a critical difference that is not often spoken about.  This was a requirement for us in any discussion regarding any move from the campus community.

Shawn is a great young man – I had the pleasure or enjoying his exuberance while volunteering in an art group at Fircrest. My son also lives at Fircrest and will be moving soon to a supported living home next month.

I fully support the RHC communities and am very disheartened by the bad press and inaccurate information that is being said about them. These communities are fully needed – some people may only need a short respite or crisis stay while others may need to live here for a longer time period. Whatever the time period everyone has the choice to leave and live elsewhere at any time. No one is there against their wishes or desires. No one is forced to live there – in fact, in order to be “admitted” families have been through some of the most horrific times of crisis that anyone could imagine. These families are survivors and have managed to advocate for their loved ones to have this care.

Our family will be forever grateful for the care of our son. He has loved living at Fircrest and when we told him that we had a new home for him we were afraid that he may not want to leave. Unlike the stories told, my son has choices – he has an iPad and is able to use it to communicate all sorts of needs and desires – he plans outings and parties and tells people what he wants to buy at the store and where he wants to go. He plans his showers around his daily schedule when he wants, he chooses and plans what he is going to eat, he goes to bed at his bedtime, he gets up early to go to work at his community job and he has a great life. Actually, as his mom, sometimes I think he has too many choices!

What would have happened to Shawn and his family if these resources of Residential Habilitation Centers were not there? I know what would have happened to my son and me.
I would have died and he very well would have too. He had spent several prolonged stays at Seattle Children’s due to mania/psychosis that was out of control. We were told that after his 6th admission he would not be able to be admitted again (this was because it was mental health care – he has a dual diagnosis of a rare neurogenic developmental disability and mental illness). We looked at staffed residential homes – none would have accepted him. We asked to have respite care at Fircrest and then an admission – they were both denied. When we asked what we were supposed to do when he had the next crisis DDA told us that we would have to call the police – that would mean that they would take him to jail. He was 14 at that time. That is not an option and never should have been considered but that is the only option we were given.

There is a lot more to the story after that about what happened but suffice it to say that eventually through various appeals he was finally able to move to Fircrest. I shudder to think of what could have happened if these communities were not there for our families.

Please stop calling these communities “institutions” and bad mouthing the services and the families that use these services. We are advocates for our loved ones and others who may not be able to speak up for themselves.

Preserve and build Respite and Crisis Stabilization

Time is running out – we need a YES Vote on SB 5243

 

save respite part 4 Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?

According to the Action Alert sent out by The Arc – Washington State they oppose this effort to preserve respite and crisis stabilization.  This bill is only aimed at preserving and building – not shutting down and limiting the few choices that our families have for respite and crisis stabilization.

It is time to question the motives of The Arc – Washington State and ask why they want to tear apart services.  Tearing down will only hurt those we are trying to help.

Please call the toll-free hotline at 1-800-562-6000 and ask your Senator to vote YES on SB 5243 – it is for the sake of our families!

Read the bill here and decide for yourself what is in the best interest of our families and community members in need of services.

(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

We need to provide choices – not restrictions

Please view the video which highlights the need for choices and options in our efforts to provide services and appropriate care and homes for those who live with intellectual and developmental disabilities.  This is one example of many that need to be options allowed and promoted.

 

 

The last of the Institutions – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted

 

 

Fact or Fiction Part 2

cost center

“Average” Daily Rates in Washington State for residents with Developmental

Disabilities who live in 4 types of Supportive Residential Care

Regarding the cost of care, it is clear that the comprehensive cost of the care of those with the highest support needs who choose the RHC is the most cost effective care.  As revealed in the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” (2011) residents in RHCs had significantly higher support needs than community residents.  The RHC residents were also significantly more likely to meet both extensive behavior and extensive medical support needs than residents in community residential programs.  “Our current findings suggest very clear difference in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs.” (Barbara A. Lucenko, PhD and Lijann He, PhD, 2011)

 

This report also examined the DDD Acuity Scales and found that the residents in the RHCs also  had significantly higher support needs in interpersonal support, protective supervision and Activities of Daily Living (personal care, dressing, bathing, eating) in addition to medical and behavioral support needs. 

 

 

Looking at the daily cost of care in each cost center, it is also clear that there is much cost shifting in some areas which make it appear that the cost of care is less expensive.  This is the information that is often not shared when comparing costs.  It is also critical to look at the support needs of the residents in each setting, realizing that those in the RHC have significantly higher support needs and inherently higher costs related to the higher support need.

 

One other area that is misrepresented is that the “community” ICF/IDs offer the very same services as the state run supported communities of the RHCs.  It is clear by auditing their costs that this is not the case.  Knowing the high support need of the average RHC resident, it is very clear that this average RHC resident could not be safely and cost-effectively cared for in the “Community” ICF/ID since the comprehensive services are only available in the RHC. 

Please see this link below for a description of the cost centers and more information on the data 

 Average Daily Cost of Care

Bibliography

Barbara A. Lucenko, PhD and Lijann He, PhD. (2011, February). Assessment Findings for Person with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Retrieved from http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf

In Washington State the term Residential Habilitation Center (RHC) is inclusive of the ICF/ID and the specialized Nursing Facility.  The costs in these reports are only for the ICF/ID part of the RHC.

 

Fact or Fiction?

Personally, I do not favor one type of environment over another as long as the person has choice and they and their families understand the issues and the person is safe.  It is for this reason that I fight so hard to help others to understand the real issues and research the data for facts – not fiction or magical thinking  – so people can be aware.

One issue that is extremely disturbing is the groundless “fact” that people believe to be true – that living in the community costs less.   When looking at the whole picture, living in dispersed housing for those with higher support needs costs much, much more than living in a supportive community such as a Residential Habilitation Center (RHC)  or Intermediate Care Facility/Intellectual Disabilities (ICF/ID)

Today I am posting Pie Charts of Costs which were taken from Certified Copies of Cost Reports that various types of agencies submitted to our state (Washington).  We hear that the services in the “Community ICF/IDs” are just the same as those in the RHCs but by looking at these simple graphs one can clearly see this is not the case.

Please take a look – more data will be forthcoming regarding costs, services and cost-shifting.

RHC Cost Breakdown

 

The RHC offers a comprehensive Package to those with high support needs who choose this supportive community setting.

 

Community ICF ID cost Breakdown

 

We are told the “Community” ICF/ID offers the very same services as the RHC – the cost data does not support that statement.

 

Group Home Costs Breakdown

 

Group Homes offer fewer services and are generally for those with less high support needs.

 

Supported Living Cost Breakdown

 

Supported Living Homes offer even fewer services and supports.  

 

 

Pilot Program Promising

Comprehensive, coordinated and cost-effective care – this is not impossible!

Children’s Comprehensive Care Clinic is a pilot program in Texas which is showing promise.  In Washington, we could expand on this by utilizing the campus communities at the Residential Habilitation Centers to become “Comprehensive Care Clinics” for our citizens with developmental disabilities.  The report, Medical Care Task Force Jan 2002,  outlines a process to establish comprehensive, coordinated and cost-effective care.

When looking at cost of care for residents in the supportive communities or dispersed communities, some of the major costs that are not included in the dispersed community costs are medical, psychological, and therapeutic costs.  Removing these costs from the cost analysis does not mean they are free – it means they are not available or accessible or not provided.  Of the many, many studies that have been done this issue of not including medical costs is a problem.  What is interesting though is that the studies that have been conducted in the UK are more accurate – different funding and different agendas.  The UK studies have consistently found that dispersed community services are more expensive than institutional services.

Another interesting issue is “quality of care” and “quality of life”.  The Arc and other DD Advocates do not look at issues that are outside the personal outcome measures, such as choice and community involvement.  They are missing a huge part of “quality of care” issues by their narrow focus and do not realize that “quality of care” influences “quality of life”.

Quality of care (health and safety outcomes) can be measured objectively where as “quality of life” is more subjective.  We meed to include measurements of quality of care into our assessments and cost analysis.  Below are some examples of areas needing evaluation.

a..  access to comprehensive health care services (primary, psychiatric and dental care as well as ancillary services, including care coordination)
b.  rates and status of abuse/neglect reports and investigations (including victimization in the community)
c.  mortality review
d.  access and utilization of behavioral services and
e.  similar direct measures.

When people who require complex care from a variety of professional services receive all their care in a “medical home” model, such as the ICF/ID, dispersing these people  will make access to healthcare, therapies, nursing, recreation and more unavailable. It is well documented that people with ID have higher rates of chronic medical and psychiatric illness than the general population.   It is also well documented that people with ID have an increased incidence of medical illnesses and have need for comprehensive, coordinated medical services. (Kaye McGivney, 2008)  For the best care it is critical to maintain the same providers over time and to avoid disruption of services. (Kaye McGivney, 2008) No longer will services be accessible or able to be shared.    This means that either the cost of care will greatly increase or that the person will not receive care.

Research also shows that those with DD, when admitted to the hospital, stay longer than those without a developmental disability.  People with DD are also less likely to be discharged to their pre-hospitalization living arrangement due to the fact that the needed supports were not accessible.  This fact highlights the importance of having specialized residential centers (ICF/IDs) to help alleviate the cost of care, crisis care and hospitalizations.  Having such centers increases stability is cost effective and provides stability to the citizens.  (Haier Saied, 2003)

Developmental Disabilities are not only experienced by the person but by the family.  We need to look at not only individual quality of life but the families’ experience and quality of life too. (Colvin, 2006) It is critical to the health and safety of our most vulnerable citizens and  a responsibility of our communities and government to realize that we need supportive communities such as the ICF/ID to best care for some of our citizens in the most cost effective, stable, reliable and safe method.

To do otherwise, is negligent.

Works Cited

Colvin, A. D. (2006). Variables Influencing Family Members’ Decisions Regarding Continued Placement of Family Members with Mental Disabilties in One State Operated Institution.

Haider Saeed, H. O.-J. (2003). Length of Stay for Psychiatric Inpatient Services: A Comparison of Admissions of People with and without Developmental Disabilities. The Journal of Behavioral Health Services & Research, 30(4), 406-417.

Kaye McGinty, R. W. (2008). Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatric Quarterly, 193-203.