June 4, 2009
Ms. Colleen Sonnenberg Ministry of Health and Long-Term Care
LTCHA Regulation Project
9th Floor, 56 Wellesley Street West
Toronto, ON, M7A 2J9
Dear Ms. Sonnenberg:
I am pleased to send you comments from the Champlain Region Family Councils Network (CRFCN) on the Proposed Initial Draft Regulations to be made under the Long Term Care Homes Act 2007. I hope you will find them useful. Like others, we feel that the one- month time period for review was very short and as a result we had to be selective about which proposed regulations we are able to comment upon.
In our view, the most serious failing of the proposed regulations is the failure to incorporate standards. Paragraph 38 (2) (a) of the Long Term Care Homes Act 2007 allows for the making of regulations “…establishing standards or outcomes that must be met.” We strongly recommend that the MOHLTC incorporate standards of care into these and the promised second set of regulations made under the Long Term Care Homes Act. That being said, there are some positive, new requirements in the Regulations and we are especially happy to note those with respect to abuse and neglect and continence care.
Should you require any additional information on our submission, please feel free to contact me at the telephone number listed below. You may also contact Mary Frances Taylor, Chair of CRFCN’s Advocacy Committee. She can be reached at 613-730-8450.
Sincerely,
Eleanor Ryan, Chair
Champlain Region Family Councils Network
Tel 613-235-5741
Comments on Proposed Initial Draft Regulations (dated May 2009)
Long-Term Care Homes Act 2007
The Champlain Region Family Council Network (CRFCN) is pleased to provide comments on the Proposed Initial Draft Regulations under the Long-Term Care Homes Act 2007. There are 60 Long Term Care homes in the Champlain Region covering the districts of Ottawa, Renfrew, Hawkesbury and Cornwall-Maxville.
In providing comments on the Proposed Initial Draft Regulations, we have kept in mind the general principles contained in the provisions of the yet-to-be-proclaimed Long-Term Care Homes Act 2007 and the Residents’ Bill of Rights. We expect the regulations to reinforce the premise that long-term care homes should provide a home-like setting where a resident's physical and care needs are met, and where his or her psychological, social, cultural and spiritual needs are met as well. The government's guiding principle with respect to long-term care in the province states that all homes must meet the needs of its residents. Both the Act and regulations should be giving effect to this principle and should require long term care homes to meet all needs, not only physical and care needs. Subsection 18(4) of the yet-to-be-proclaimed Long- Term Care Homes Act 2007 contains sufficient regulation-making authority to ensure that homes meet the comprehensive needs of residents as these are set out in the Residents’ Bill of Rights.
While we commend the Ministry for its consultative process on this set of proposed regulations, the timing of the consultation is problematic. We find it difficult to comment without knowing what will be included in the second set of regulations referred to in the covering notice to the document. As well, we are aware that the content of proposed regulations will be affected by other unknowns such as the results of the work currently being undertaken by Shirlee Sharkey and possibly by the report of the Ontario Ombudsman on conditions in Ontario nursing homes.
GENERAL COMMENTS
Standards and Outcomes
It is disappointing to say the least that there are no standards of care embodied in the proposed regulations nor is there any reference to any other source which will contain standards of care, for example, a Facility Manual. In our view, without standards the Ministry of Health and Long- Term Care (MOHLTC) will be unable to hold the Long-term Care (LTC) facilities to account, either legally or morally, for a consistent quality of care of residents.
All of the major seniors' groups in the Province, residents' and family groups, the Ontario Health Coalition, unions, nurses and others have called for a minimum care standard to be imposed across Ontario's long term care facilities to begin to bring us into line with the best practices for improving resident care identified in all international research. Then Health Minister George Smitherman agreed to amend Bill 140 to enable the government to implement a minimum care standard. Since then, in violation of pre-election promises by the Premier and the Health Minister, no minimum care standard has been introduced and it is not included in these draft regulations.
This is the most serious failing of the proposed regulations. Paragraph 38 (2) (a) of the Long- Term Care Homes Act 2007 allows for the making of regulations “…establishing standards or outcomes that must be met.” We strongly recommend that the MOHLTC incorporate standards of care into these and the promised second set of regulations made under the Long Term Care Homes Act.
Also, there are no specific Outcomes to be achieved by LTC homes in the proposed regulations. Clearly defined Outcomes with respect to resident care are needed to ensure accountability in the long-term care facilities. Outcomes are measurable and by mandating them in the regulations, homes will be required to become proactive rather than reactive in their planning for care of residents.
Resident Care
The proposed regulations should contain an AVERAGE standard for direct, hands-on care per day, per resident. Despite repeated and widespread requests for a minimum of 3.5 hours (on average) of direct care per day per resident, the proposed regulations are silent on this topic. In incorporating the standard, it should be made clear that the average of 3.5 hours per day refers to actual hours worked, exclusive of sick, vacation, training or any other indirect time for which staff are paid.
The regulations must include care requirements for residents with chronic diseases that require more direct hands-on medical and nursing care. For example diabetic residents or residents with Chronic Obstructive Pulmonary Disease (COPD) who require their oxygen saturation levels to be monitored daily to ensure they have the right amount of oxygen in their systems. Extra care should be defined to include medical, nursing and Personal Support Worker (PSW) care.
Neglect
Neglect is not sufficiently defined in these proposed regulations. The legal community of Ontario [e.g. the Advocacy Centre for the Elderly (ACE) and Community Legal Education Ontario (CLEO)] agrees that neglect is a form of abuse. The proposed definition of neglect does not clearly include emotional neglect, isolation, a pattern of ignoring the resident or ignoring their Substitute Decision-Maker (SDM) when they are describing unmet needs or withholding of supplies such as incontinence products. The definition should be expanded to include inaction or a pattern of inaction that jeopardizes not only health and safety, but also specifically physical comfort and psychological well being. The definition of “neglect” must capture systemic neglect. The better definition would be the definition used by the Ontario Network for the Prevention of Elder Abuse, as follows:
“Neglect can be intentional (active) or unintentional (passive) and occurs when a person who has care or custody of a dependent senior fails to meet his/her needs. Forms of neglect include: withholding or inadequate provision of physical requirements, such as food, housing, medicine, clothing or physical aids; inadequate hygiene; inadequate supervision/safety precautions; withholding medical services, including medications; overmedicating; allowing a senior to live in unsanitary or poorly heated conditions; denying access to necessary services (e.g. homemaking, nursing, social work, etc.) or denial of a senior's basic rights.”
Plans of Care
The Regulation making power under Section 38 (2) (e) allows for the making of regulations “governing plans of care, including governing their development and implementation and setting requirements in addition to what is required under Section 6 [of the Act]”. The proposed regulations do not go far enough.
The plan of care is a critical document and must be taken seriously and followed by the LTC doctors and staff. These plans of care (initial and comprehensive plan of care) must be approved by the resident/SDM or family member/person-of-importance-to-the-resident in conjunction with their doctor. It is not sufficient for the LTC facility to develop the plan of care and not consult or seek the approval of the resident/SDM or family member/person-of-importance-to-the-resident.
The implementation time line must be stated in the initial and plan of care. The time requirement to develop an initial plan of care is too open-ended and could allow a resident’s health to severely diminish or the resident could die or injure a staff member or another resident within the 21 days before a comprehensive plan of care is developed.
Plans of care and changes to plans of care must be fully communicated in writing to all direct care staff on an on-going basis to ensure that all direct care staff are fully aware of the needs of every resident in their care.
Plans of care must take into full account the care that was previously provided by a hospital or a previous LTC home before developing a new plan of care. Plans should fully justify why or why not they are going to follow a previous treatment plan.
The proposed regulations do not address continuity of care, whether that continuity is from shift-to-shift within the same home or when a resident is transferred from hospital to a LTC home or from one LTC home to another.
Transparency and Openness
There is virtually nothing in the proposed regulations requiring transparency and openness. There is a lack of transparency for the resident, SDM, family member or person-of-importance-to-the-resident and for the general public in matters of the care of residents and operations of the LTC home. Examples of transparency would include:
- Staffing levels at each LTC should be posted on the MOHLTC website and updated on a bi-annual basis.
- The regulations should require the MOHLTC to post on its website all details of annual compliance reviews of each home within three months of the review.
- Any and all Ontario Government audits on LTC facilities or on any aspect of LTC facilities should be publicly posted on the MOHLTC web site.
- Should a resident or SDM/family member or friend-of-importance request to view or receive a copy of a medical record, a plan of care or other related document, whether in hard copy or in electronic format, the regulations should, within the constraints of privacy concerns, allow these persons access to the information unless the resident specifically requests otherwise.
It is hoped that the Resident Assessment Instrument – Minimum Data Set (RAI-MDS) program will go some way to addressing the lack of transparency.
Transparency and open communication leads to better quality of care in our society.
Communication
The regulations should clearly address the need to fully communicate with residents or SDMs/family members or friends-of-importance.
What is sadly missing is any reference to the manner of communication to the family/care giver of the resident. Many of the residents in these homes are incapable of stating their wants, wishes and needs to the LTC staff. This is where the family or caregiver members can greatly contribute and deserve to be included so as to help with care plans, and other day to day care, thereby enhancing the life of the resident. As it is right now, many decisions that are made for the care of the residents are made between and among LTC staff and never communicated to the family. Unless a family member happens to be around when something takes place and they are able to question it, they do not really know what care is being undertaken. Many family members do not know the questions to ask staff, and staff members do not volunteer any information unless asked, so family members are often left in the dark as to what is taking place in the day to day care.
Funding and monitoring
The proposed regulations should state the frequency of monitoring to the funding terms of reference. LTC homes’ operators should be monitored closely and should not be allowed to move money out of the nursing envelope to be used for other purposes or move expenses into the nursing envelop. This will effectively cause less money to be available for hiring nurses and personal care staff.
The Nursing and Personal Care envelope has been used to fund a variety of items that should be considered part of the accommodation envelope, including incontinence supplies, staff and security systems, among others. The regulations should specify that these items cannot be charged to the Nursing and Personal Care envelope.
Governance
As stated on the MOHLTC website, all long-term care homes in Ontario operate according to general principles and specific guidelines and requirements outlined in the following:
- Laws — statutes passed through a vote in the Ontario Legislature and the regulations made pursuant to those statutes
- Service Agreements — contracts between the LTC home providers and the Government of Ontario
- Standards — standards and policies, set by the Government, that all homes must meet or follow
Assurance is needed now that the Service Agreements will be amended to reflect all requirements in the new regulations. Once the Regulations are finalized, all existing “Service Agreements” should be brought into line as quickly as possible to reflect the contents of the regulations.
It should always be easy to trace the requirements of the regulations in the LTC Service Agreements especially with respect to plans of care. If requested, the members of a Family Council should be given access to the long-term care home’s Service Agreement.
Physicians’ contracts with LTC homes should clearly reflect the spirit and letter of the LTCHA and Regulations. We recommend that the terms of physicians’ contracts should be standardized across the Province and all the standard clauses required in these contracts should be publicly posted on the MOHLTC website so they are accessible to all without infringing on the privacy of an individual physician.
Compliance
Review It is difficult to determine from the draft regulations on what basis compliance officers will conduct an independent and objective compliance review.
It should be a clear requirement that any complaints, charges of lack of care or other issues that have been raised by Family Councils, family members and SDMs must be investigated during compliance reviews and specifically addressed in the reports. Compliance reviews should not be one sided nor give the impression that they are. Complaints cannot be considered from the perspective of the management of the LTC facility only.
Sections missing from the proposed regulations
There are no proposed regulations on Family Councils. In the absence of direction, some LTC homes require a Family Council member to leave the home’s Council on the death of the member’s family member, partner or friend who was resident in the home. We do not agree with this practice nor do we think it fosters strong Family Councils. Councils need continuity and informed members. Since death is often unpredictable, several Council members could be required to leave within a short period of time thereby diminishing a Council. The regulations should allow for an interested and experienced individual to become, or continue as, a member of a Family Council regardless of whether the member has a family member or partner resident in the home. If membership is to be limited in some way, the regulations could provide that a member of a Family Council cannot run for office on the Council unless they have a family member or partner in the home.
We assume that proposed regulations under Part IX of the Act dealing with compliance reviews will be included in the second set of draft regulations and that they will also be the subject of consultation. Such regulations are essential. Residents, Family Council members, SDMs and persons-of-importance-to-residents must be involved in the compliance reviews.
In our view there should be a rights adviser or resident advocate for each LTC home. This advisor/advocate should be hired by the MOHLTC to ensure independence. Finally, the regulations should deal with transition from the old Act to the new Act and regulations. Where are the regulations for this transition time period?
COMMENTS ON INDIVIDUAL SECTIONS OF THE PROPOSED REGULATIONS
PART I
Section 1 Definitions
“registered nursing staff” should read “means a member of the College of Nurses of Ontario who holds a certificate of registration as a registered nurse, or a registered practical nurse under the Nursing Act, 1991”
“private accommodation”, there is no mention that a bathroom with a toilet and sink is included. Some of the older nursing homes do not have this.
“semi-private accommodation”, there is no mention that a bathroom with a toilet and sink is included. Also, the room should be adaptable to accommodate a wheel chair and/or walker or a portable lift.
Section 2 Abuse
The definition should be amended to include neglect, a common form of abuse in LTC facilities. Neglect means failing to give an older person in one’s care food, medical attention, or other necessary care, or abandoning an older person in one’s care. See our proposed wording under General Comments
PART IISections 9 - 15 Required Programs
9(2)(f) “annual written evaluation” should read “quarterly written evaluation” given that the new RAI-MDS reporting will commence in 2010.
11(1)3. Skin and wound care “Routine skin care, including…….”. The meaning of “Routine” should be clarified. Does it mean daily, weekly, monthly?
12(2)(a) This is a very positive provision but there is no mention of patients with dementia or Alzheimer’s disease. Such patients should not be considered incontinent when they can still let you know that they need to be toileted. For example: a resident who is unable to speak may yell loudly when in need of toileting.
12(2)(c) Continence care and bowel management: each resident who is unable to toilet independently, some or all of the time, receives assistance from staff to maintain or promote continence. What is the maximum wait time that a resident is expected to endure before someone does come to help them? There is a need for a standard. The words “or promote” should be removed from this paragraph as there is not enough evidence to support its inclusion.
12(2)(e) Each resident who uses continence care products has sufficient changes to remain clean, dry and comfortable and that there are appropriate numbers and types of products available to do so. What measures will be in place to ensure that long-term care homes are prohibited from cutting costs by limiting continence care products?
We support the introduction of paragraphs 12(2) (e) and (f). Implementation will enhance the dignity and comfort of residents.
Sections 16 -19 Abuse and Neglect16 Policy to Promote Zero tolerance
We strongly support this proposed regulation. We suggest adding a second sub-section as follows:
“
16 (2) Every licensee shall ensure that the policy to promote zero tolerance of abuse and neglect of residents is communicated to all staff, residents, residents’ substitute decisionmakers and Family and Resident Councils.“ This will ensure that Family and Residents Councils know the LTC homes’ policy should an item under this heading come before the Councils.
7 Police Notification
The new section is most welcome. The public’s awareness of abuse of seniors has increased in recent years. Having this new section will ensure appropriate action is taken by the police. The potential for notification could also be a deterrent and reduce incidents of abuse. Zero tolerance of abuse should apply for all vulnerable citizens including the residents of long term care homes many of whom suffer from dementia and mental illnesses.
19(b) “once in every calendar year”, should read” once every quarter in every calendar year”
19(d) We recommend adding “A written report should be submitted to the Family Council and Residents Council and a copy placed on the Bulletin Board for 30 days”.
Sections 20 - 25 Minimizing of Restraining
20.Restraining by use of a drug
Although covered in the Act, the proposed regulations do not address the use of drugs, and in particular anti-psychotic drugs, as a restraint. These are used in LTC homes and often as a first measure for controlling the behaviour of residents before assessing if there are medical problems causing the behaviour. E.g. Diabetic neuropathy causes severe pain and if not treated the resident will cry out in pain and shout often if they are touched on the extremities. It should be clear that use of such drugs, unless specifically permitted in the plan of care, should require family member or SDM approval. In addition, if such a drug is administered under Common Law Duty, there should be a requirement to inform a family member or SDM that the drug has been administered.
21 Requirements relating to restraining by physical devices And
22 Requirements relating to the use of PASDS
These 2 sections seem to overlap and are confusing.
25 (a) Analysis of the restraining of residents by use of physical devices should be undertaken on a monthly basis “once in every calendar year”. This should be changed to read “once every quarter in every calendar year”.
26 Absences
26(2) (a) & (b) Where medical absence not to exceed 30 days and psychiatric absence not to exceed 60 days. Should the regulations not allow some flexibility? Every situation is different and there are always some extenuating circumstances with the health of the elderly.
26 (2) (a) & (4)(b)(i) - Long stay resident versus Short stay resident. Why not make the requirement of 30 days the same for both?
PART III
Sections 30 - 33. Eligibility for Admission
30. The draft regulations appear to have the effect of making the criteria for eligibility more restrictive.
30(3)(1) & (2) place considerable emphasis on accessing community-based support and resources before an applicant can be considered eligible for placement in a LTC facility. This appears to be in keeping with recent thinking in regard to a greater reliance on in-home care as the number of aging Canadians grows. It is important to ensure that the support services are indeed available. While not the subject of these regulations, it is important to state our concerns over the need for appropriate, complementary and timely action in both LTC facilities and home-care.
Section 30 (1) establishes 18 as the minimum age for LTC eligibility. There is a serious need to provide care for young individuals in need of lifetime assistance. Some of these opportunities exist in group homes and other venues. Seeking to provide care for these individuals in homes where the vast majority of residents are the elderly frail is not in the interests of either group. Young individuals should only be placed in long-term care homes in exceptional cases or as an absolute last resort.
- Younger residents who are stronger and less compromised physically but with cognitive or psychiatric disabilities should never be placed where they have the opportunity to put frail elderly residents at risk of physical injury.
- LTC staff often lack the training and expertise to deal with geriatrics let alone be able with manage residents with dementia in combination with serious psychiatric disabilities.
- LTC is a community geared to meeting the needs of an elderly population since the majority of residents are typically over the age of 80. It is a disservice to house younger individuals in a setting that cannot meet their social needs.
- There is no critical mass of younger residents within LTC facilities that would enable programming to be developed and experienced staff hired to meet their specific needs.
- If LTC facilities were to offer care to younger residents with psychiatric disabilities, there would need to be professional supports in place or in close proximity to provide staff with the guidance, education, training, crisis intervention, etc. That would be required on an ongoing basis.
- Physically disabled younger residents have little in common with the frail elderly and normally cannot live a fulfilled life in such a setting.
33. Some number of LTC beds are designated for veterans. This is as it should be. That said, at least paragraph (e) of 30(1) should also apply to veterans.
Sections 36 - 39 Approval by Licensee
36,37,38 & 41 The words ‘approval for admission’ should be replaced throughout with ‘ approval of the application for authorization of admission’ OR simply change ‘admission’ to ‘request for admission’. Otherwise, this reads as if the applicant is being immediately admitted rather than being approved for placement on a home’s waiting list.
Sections 40 - 43 Keeping of Waiting List
42 An applicant should not be removed from every waiting list but should be allowed to postpone “accepting” in circumstances where the applicant can continue at current living arrangements. Sophisticated technology can ensure that waiting lists are managed so that every effort is made to allow applicants to continue to live at home or other residences until it is absolutely necessary to go to a LTC home. The “Aging in Place” policy of the Ministry can provide assistance to keep applicants in their present arrangements or in some cases enable private care.
The following examples illustrate our point.
Case No 1. An Applicant’s health was declining in a retirement residence. The individual was placed on a waiting list with three choices. After approximately two years, one of the three chosen LTC homes became available. Although the applicant could have stayed in the retirement residence for six or more months with assisted care, the applicant accepted the placement in order not to be removed from the waiting list and wait a further two or more years for a place of choice. The better outcome for this applicant would have been to stay on the list and go to place of choice when it was necessary. Dollar savings of six or more months of not being in a LTC home would have resulted.
Case No 2. An Applicant is in a retirement residence and has been on a waiting list with a choice of three LTC homes for one year. Personal assistance becomes available which will allow the individual to continue living at the retirement residence. If the applicant’s number one choice becomes available and knowing that there is a waiting list of over four hundred for that home, the individual will have the difficult choice of deciding whether to decline the offer, be removed from the list and have to wait another two to three years for that LTC home of choice?
If applicants were given the opportunity to decline a move but stay on the list of choice until a move is needed, that person could continue living in the retirement residence. The individual would likely be willing to incur additional personal costs in order not to go to a LTC home before it is absolutely necessary.
Sections 44 – 55 Placement into Categories on Waiting List
46 - 49. These categories identify the priority for admission to a facility and the applicant’s subsequent position on the wait list. There is no provision, however, that gives priority to LTC home applicants in continuum settings such as retirement homes. For example, an elderly person, living alone, cannot remain in his/her home even with home care because that level of care no longer meets his/her needs. Although eligible for LTC, if no bed is available and probably will not be available for a year or longer, this person has no choice but to move to a retirement home. Because the level of care is insufficient to his/her needs, he or she must purchase additional services to supplement what the retirement home provides. He/she cannot afford to do this on an ongoing basis. Should this person’s situation not be considered at least as high a priority as a spouse/partner reunification (Category 2)? Another example calling for priority would be the case of a couple each of whom has serious health problems so that neither can any longer assist the other adequately. Such cases, surely not unusual, are not provided for in the regulations.
6/10/2009
