A summary of this committee meeting is not yet available.
STANDING COMMITTEE ON PRIVATE MEMBERS' LEGISLATIVE PROPOSALS AND SPECIAL PETITIONS
21 August 2002
UNEMPLOYED EMPLOYABLE SOUTH AFRICAN NATIONAL DATA BILL; MEDICAL SCHEMES AMENDMENT BILL; PATENTS AMENDMENT BILL; PUBLIC FUNDING OF REPRESENTED POLITICAL PARTIES AMENDMENT BILL; PETITIONS BY MRS BOTHA, MR B CLARKE AND MR D BROWN: DISCUSSION
Chairperson: Mr P Hendrickse (ANC)
Documents handed out:
Powerpoint presentation on Hlengwa legislative proposal
Memorandum to the Medical Schemes Amendment Bill [Appendix 1]
Correspondence on Medical Schemes Amendment Bill from Mr Bell (MP) [Appendix 2]
Memorandum to the Patents Amendment Bill [Appendix 3]
Public Funding of Represented Political Parties Amendment Bill
Petition by Mrs Botha [Appendix 4]
Petition by Mr D Brown [Appendix 5]
Petition by Mr Br B Clarke [Appendix 6]
The Committee dealt with a variety of issues, namely, Ms Van Huyssteen's departure, the way forward on a number of private Member's bills. With respect to the Medical Schemes Amendment Bill, it proposes that the amendment would only apply to Medical Schemes that have a clause in their constitution that states that on retirement the member will receive a discounted rate subject to whatever restrictions are applied. The Bill could be referred to a relevant parliamentary committee for discussion. The proposal to amend the Patents Act through the Patents Amendment Bill will be held over as there is another relevant Bill which will be tabled shortly. The main objective of the proposed amendment is to create a safety mechanism in the sense that it will facilitate easier access to generic drugs and/or parallel imports in the face of any health crisis.
Ms Van Huyssteen's departure
The Chairperson informed the Committee about Ms Van Huyssteen's departure. Ms Van Huysteen was a member of Parliament's table staff. He expressed his disappointment that even though Ms Van Huyssteen gave notice for three months, no efforts were made to find a replacement for her. It was only after she left that advertisements were made for the post. Ms Van Huyssteen was not available to bid farewell to the Committee.
The way forward on the Unemployed Employable South African National Data Bill
The Chairperson mentioned that Inkosi MW Hlengwa (IFP), who had made a proposal for the above, has been re-deployed by the IFP to his province. A suggestion was made that the IFP should be contacted and requested by the Committee to bring someone from their party to finalise this issue.
The way forward on Medical Schemes Amendment Bill
Mr B Bell (DP) made a proposal that the Medical Aid Schemes Act (MESA) should be amended. He said that the amendment would only apply to Medical Schemes that have a clause in their constitution that states that on retirement the member will receive a discounted rate subject to whatever restrictions are applied. He mentioned that the proposed Clause 7(b) would apply to a Medical Scheme whose sole purpose is to provide short-term medical cover to all who are prepared to join their scheme. He was adamant that a statement be made at Clause 7(c) that discrimination is not acceptable and that the word "shall" be replaced by the word "must''.
Mr Bell mentioned that Clause 7(d) discusses the financial implications of the proposal and commented that if this clause was insisted upon for all medical schemes the financial implications would have to be investigated. The suggestion that there be a joint process between the Departments of Health and Labour to identify potential solutions is acceptable in a long term. Any solution that is found to reduce the cost of medical cover to a pensioner is very important. He concluded that he would implore that this amendment be accepted to cover the medical schemes that at present have this arrangement in their rules and any long-term solution is negotiated in the future.
The Chairperson asked whether the Registrar of Medical Schemes supports of this amendment.
Mr Bell replied that at the moment the Registrar is turning a blind eye to the discount unless somebody complains.
Mr Mshudulu (ANC) commented that this topic has extensive consequences and suggested that this be discussed separately at another meeting to be scheduled for later this year. He suggested that since there are no parliamentary meetings the following week, a Committee meeting could be arranged for the week thereafter.
Mr da Camara (DP) suggested that the Committee send this proposal to the relevant committee such as the Trade and Industry Committee that has expertise on these issues.
Mr T Abrams (UDM) agreed with Mr Mshudulu's suggestion that further input be presented to the Committee during the next meeting.
Mr Kgwele (ANC) agreed with Mr Abram's view and added that the proposal must be adequately considered both by the Committee and in party caucus before any decision is made.
Mr da Camara said that such discussions can similarly take place in a Committee that is experienced in such issues, not this Committee.
The Committee then agreed that this issue would be dealt with during the next meeting scheduled for 4 September 2002.
The way forward on Patents Amendment Bill
Ms Sandy Kalyan (DP) spoke briefly about the objectives of the amendment. She said that the main objective of the proposed amendment is to create a safety mechanism in the sense that it will facilitate easier access to generic drugs and/or parallel imports in the face of any health crisis. She said that there is another Bill that will be coming before parliament soon and that there is the likelihood that the said Bill would be an Act soon. She suggested that the proposal for the amendment of the Patents Act stand over until such time as the above Bill has been enacted.
The way forward on Public Funding of Represented Political Parties Amendment Bill
Mr D Gibson (DP), who proposed the above legislation, was not present at the meeting. It was agreed that he would make his presentation during the next meeting.
Mr G Clarke
The Chairperson reported that Mr Clarke's proposal was approved both by the Committee and by Parliament, and that the Department of Finance is currently dealing with this issue. He said that he has contacted Advocate Fourie at the Department to follow up on what has been done about this matter. Adv Fourie explained that this would be a long process that will take up to two years. The Chairperson has also contacted the National Assembly to ask the Chair as to whose responsibility is it to follow up and is awaiting an answer.
The Committee supported Mrs Botha's petition that was opposed by the National Treasury. It was agreed that the Treasury should pay Mrs Botha. Such money will be paid out from the National Revenue Fund. All the Committee has to do is to agree on the amount. It was agreed that all Members would look thoroughly into this matter and come up with a figure in the next meeting.
Mr Brown was doing compulsory military service while he was injured and left paralysed for the rest of his life. He now receives a pension that is insufficient. He would like his pension to be increased. The Commission wrote a letter to the Department of Defence (DOD) to enquire if it can assist Mr Brown. The DOD replied that it would not assist Mr Brown in his endeavour, but referred Mr Brown to the Treasury. The Commission agreed to enquire on behalf of the Committee which government Department's responsibility this is.
The meeting was adjourned.
Dear Madame Speaker,
SUBMISSION OF LEGISLATIVE PROPOSAL IN TERMS OF RULE 234 OF THE
NATIONAL ASSEMBLY RULES: AMMENDMENT TO THE MEDICAL SCHEMES
Please find attached a copy of the memorandum required in terms of Rule 234 (1) pertaining to the amendment of the Act No 131, Medical Schemes Act, 1998 which I intend introducing in the Assembly in an individual capacity for purposes of obtaining the Assembly's permission of Rule 230 (1).
It is submitted that the attached memorandum conforms to the requirements as set out in the rule.
You are hereby requested to table the memorandum in the National Assembly as required in terms of Rule 234 (1) as well as to the Committee for Private Members Legislative Proposals and Special Petitions.
Thanking you in anticipation. Yours faithfully
Mr B.G Bell MP
AMMENDMENT TO MEDICAL SCHEMS ACT 1998
ACT NO 1311998
Private Members Bill
Submitted in terms of section 73(2)
Read with section 76 (1) of the Constitution
Notice is hereby given of the introduction of a private member's in terms of section 73
(2) read with section 76 (1) of the Constitution. In terms of Rule 234 (read with rule
230L1]), a member must submit to the Speaker a memorandum which -
(a)(b) Sets out particulars of the proposed amendment
Explains the objects of the proposed legislation; and
(c) States whether the proposed legislation will have financial implications for the State and, if so, whether those implications may be a determining factor when the proposed legislation is considered.
The Honourable Speaker is requested to deal with this Bill in terms of section 235 of the National Assembly Rules.
(a) & (b)
A. PARTICULARS OF A PROPOSED AMENDMENT TO THE MEDICAL SCHEMES ACT, 1998 ACT NO 131 OF 1998
At the time when the Medical Schemes Act was passed by Parliament the spirit of the Legislation was to ensure that medical schemes could not differentiate between parties of different age groups. The Act therefore calls for only one rate for all members of the scheme, and may only vary the charge according to income and number dependants.
At the time it was recognised that there are Medical Schemes that actually have a discounted rate for members who have completed a period of membership and retire from their employer due to age or health reasons and apply to be a continuation member of the scheme. The medical schemes that operate under these conditions are usually closed schemes where the employer is the member of the scheme and employees are obliged to belong to the scheme. The employer during a member's employment contributes at a rate, which allows the medical scheme to offer this discount to pensioners.
In order to provide for the pensioner to continue to receive this donation it is necessary to amend the Medical Schemes Act.
1. Proposed amendment to Chapter 5 RULES OF MEDICAL SCHEMES
21 (l)(n) The terms and applicable to the admission of a person as a member and his dependants, which in terms and conditions shall provide for the determination of contributions on the basis of income or the number of dependants or both the income and the number of dependants, and shall not provide for any other grounds, unless conditions under Rule 29(1) (v) applies, including age, sex, past or present state of health, of the applicant or one or more of the applicant's dependants, the frequency of rendering health services to an applicant or one or more of the applicant's dependants other than for the provisions provided.
29 (1)(v) The terms and conditions of a member who after a period, as required in the rules of the scheme, retires from the employment of a member employer due to reaching retirement age or ill-health may include the scheme offering the member a discounted rate for membership. On the death of such member his spouse may continue to enjoy the discounted rate as set out in the rule of the scheme.
(c)This proposed amendment to the Medical Schemes Act, 1998 Act No 131 of 1998 will have no financial implications on the State.
21 August 2002
Standing Committee on Private Members Legislation
Dear Mr Hendricks, MP
In reply to the letter concerning my proposal to amend the Medical Schemes Act from Mr Harrison Head: Research and Monitoring dated 18 June 2002 I make the following submission.
1. The amendment would only apply to Medical Schemes that have a clause in their constitution that states that on retirement the member will receive a discounted rate subject to whatever restrictions are applied. Therefore the company and the member are aware of the situation and during the members working like he and the company are providing for this discounted rate. Clause 7a would not apply as the Medical Scheme only has to apply their rule and is not responsible for the funding.
2. Clause 7b would apply to a Medical Scheme that sole reason is to provide short-term medical cover to all who are prepared to join their scheme. There are a number of Medical Schemes that go beyond that and these schemes are generally company owned and their employees are required to join the scheme as a condition of employment. These schemes have a long-term responsibility as an extension of the employer and need to have a different set of norms.
3. A statement could cover clause 7c that discrimination is not acceptable and the word "must" be inserted.
4. Clause 7d discusses the financial implications of the proposal and I agree if this clause was insisted upon for all Medical Schemes the financial implications would have to be investigated. But this clause would only apply to the M6dical Scheme that has such a clause in their constitution and perhaps to a new scheme should the company or employer so desire. Medical Schemes that serve a particular company or group of companies usually make membership of their medical scheme a condition of employment.
5. The suggestion that a joint process between Health and Labour to identify potential solutions is acceptable in the long term. Any solution that is found to reduce the cost of medical cover to a pensioner is very important.
6. I would implore that this amendment be accepted to cover the Medical Schemes that at present have this arrangement in their rules and any long-term solution is negotiated in the future.
Brian Bell MP
It is hereby notified that the introduction of a Bill in terms of Section 73(4) read with section 76(2) of the Constitution will be made. This memorandum contains:
· Particulars of the proposed legislation;
· The objectives of the proposed legislation; and
· An indication of the financial implications of the proposed legislation and an indication of whether such implications may be a determining factor in the consideration of the proposed legislation.
The required legislation is set out herein.
PARTICULARS OF THE PROPOSED LEGISLATION
The following amendments to the PATENTS ACT 1978 (ACT 57 OF 1978) [hereinafter referred to as "the Act"] are proposed:-
1. Insert the following definitions in section 2 (the definitions section) of the Act:-
"President" means The Head of State as referred to in section 83 of the Constitution (Act 108 of 1996).
"petitioning Minister" for the purposes of section 56A and 56B means a Minister referred to in section 91 of the Constitution who applies for a compulsory license. "national emergency" shall be declared by the President in terms of section
"reasonable period of time" shall be deemed to be a period of three calendar months unless circumstances justify acting within a shorter period. "Cabinet" is as defined by section 91 of the Constitution.
"Public non-commercial use" shall include all projects and provision of goods and services which are completely funded by government and/or donors for the benefit of the general public at large and no fee shall be payable by members of the public to benefit from such goods and services.
2. Insert a new section after section 56 to be numbered section 56A, to deal with the issue of compulsory licenses for public non-commercial use.
Compulsory license for public non-commercial use
56A (1) A petitioning Minister may apply to the Commissioner for a compulsory license under a specified patent in circumstances where,
(a) The license is required for public non-commercial use; and
(b) The license is required for the health, welfare or security of the nation and the threat faced by the nation is of such a nature that given the resources of the State it cannot reasonably be dealt with by any other measures in the ordinary course of events; and
(c) Agreement could not be reached, within a reasonable period of time, between the petitioning Minister and the patentee regarding the terms under which the license was to be granted.
(2) The Board of Trade shall make a determination of the remuneration to be paid to the patentee and the manner in which such remuneration is to be paid. In making such determination the aforesaid Board shall consider:
(a) The economic value of the license.
(b) The cost of developing the patented article.
(c) How and by whom the cost of developing the patented article was paid.
(d) The economic and financial position of the State.
(e) The need for which the license is required.
(f) Representation from the patentee.
(3) The aforesaid determination shall be lodged together with the application to the Commissioner for a compulsory license and the commissioner shall be bound by such determination unless the patentee can show that such determination is not equitable in the circumstances.
(4) The petitioning Minister shall, in the application to the Commissioner, set out the purpose for which such a license is required and the time period for which the license is required.
(5) The Commissioner may issue the license under such terms and conditions, relating to the remuneration and duration of the license, as are just and equitable in the circumstances.
(6) Any license issued under this section shall be non-exclusive, and may not be assigned, and goods produced under such a license shall only be used and distributed within the Republic for non-commercial public use.
(7) The patentee may apply to the Commissioner, on good cause shown, to revoke a license granted under this section.
(8) The patentee may apply to the Commissioner, on good cause shown, to vary the conditions under which such a license is granted in terms of this section. This shall specifically include the right to apply for a variation of the determination made in terms of subsection 2 above.
(10) Nothing contained herein shall derogate from the patentee's right to take any ruling or decision of the Commissioner on appeal or review. However, subject to the patentee's right to claim damages, lodgement of such an appeal or review shall not suspend the operation of such license pending the outcome of the appeal or review proceedings.
3. Insert a new section after section 56A to be numbered section 56B, to deal with the issue of compulsory licenses in cases of national emergency.
Compulsory license in cases of national emergency
The President may, after consultation with the Cabinet, declare a national emergency in circumstances where the health, welfare or security of the nation warrant urgent remedial action.
(2) The President shall issue a notice setting out the nature and extent of the national emergency. Such notice shall be published in the Government Gazette and, if circumstances allow, shall be delivered to a patentee whose patented article may be required to deal with the national emergency.
(3) The petitioning Minister who is responsible for dealing with the national emergency concerned must lodge with the Registrar of Patents a copy of the aforesaid notice.
(4) The Minister of Trade and Industry acting in conjunction with the Minister of Finance, shall make a determination of the remuneration to be paid or compensation to be made to the patentee and the manner in which such remuneration is to be paid or compensation made. In making such determination the aforesaid Minister shall consider:
(a) The economic value of the license
(b) The cost of developing the patented article,
(c) How and by whom the cost of developing the patented article was paid,
(d) The economic and financial position of the State,
(e) The nature and extent of the national emergency,
(f) The need for which cense is required, and
(g) Representation from the patentee, if time and the prevailing circumstances allow.
(5) The petitioning Minister must lodge an application with the Registrar together with the determination made by the Ministers of Trade and Industry and Finance.
(6) Subject to the patentee's right to subsequently claim damages should a license not be confirmed, or should a license be revoked, once such an application is lodged with the registrar it shall be deemed that a license has been issued on the terms requested in the application.
(7) The application shall then in due course be referred to the Commissioner for determination, who must:
(a) If satisfied that the President has issued the certificate of national emergency lawfully, and
(b) If satisfied that the determination of the Minister's of Trade and Industry and Finance is just and equitable in the circumstances, confirm the license deemed to have been issued.
(8) In the event that the Commissioner is not satisfied with the determination by said Ministers, the Commissioner may confirm the license under such terms and conditions as are just and equitable.
(9) Any license issued or ruling made by the Commissioner may be appealed or reviewed in accordance with the laws of the Republic.
^O (10) Should the petitioning minister or the President be found to have abused their discretion by a competent court of law they shall be liable for damages, including punitive damages.
(11) Subject to the patentee's right to claim damages, any appeal or review that is lodged shall not suspend the operation of such license until the relevant court has finally determined the matter.
(12) The patentee may apply to the Commissioner, on good cause shown, to vary the conditions under which a license is granted in terms of this section.
(13) Any license issued in terms of this section shall be non-exclusive and non-assignable.
(14) Goods produced under such a license shall be predominantly for consumption within the Republic.
(15) The license shall lapse when the President withdraws the certificate of national emergency or when the patentee proves in court that the circumstances in which such certificate was issued have ceased to exist.
B. THE OBJECTS OF THE PROPOSED AMENDMENTS
Although these amendments are not aimed exclusively at any field in particular, the HIVIAIDS pandemic has clearly illustrated the need for amendments of this nature. The intention is to provide a mechanism to secure technology or patented articles where either the State cannot afford such technology or patented articles for consumption by the State or where there are circumstances which amount to a national emergency. The intention is to tailor the terms and conditions under which such licenses are issued to the circumstances in which the licenses are required.
C. FINANCIAL IMPLICATIONS
The proposals are amendments to existing legislation. No new agencies are required to implement these amendments. The amendments should not place any undue strain on the existing agencies that have to implement them. Although there may be financial implications, they are not so significant as to affect the desirability of such amendments. The need for this type of legislation outweighs the consideration of possible financial implications, which are likely to be secondary in nature.
NAME OF MEMBER: Sandy Kalyan
SUMMARY: SPECIAL PETITION: Mr B D BROWN:
1. Sponsor (Mr J Selfe) submitted petition to Speaker on 26 July 2000.
2. Petition screened by law advisers for constitutionality and meeting requirements of a "special petition" in terms of Rules - 18 August 2000
3. Petition approved by Speaker for tabling and referral to this Committee - 22 August 2000.
4. Petition referred to Committee on 30 August 2000.
· Mr Brown was doing compulsory military service in 1985.
· He sustained head injuries, leaving him in a coma for 6 weeks.
· The effect of the injuries: Paralysis on right side, psychological problems and serious headaches daily. Had to relearn to read, write and walk.
· Cannot hold down position - has tried several times, with no success.
· Unable to study or qualify for a career.
· Receives a military pension - insufficient to make ends meet.
· Aged mother assisting him financially, but is battling to pay back loans from ABSA Bank as a result of such assistance to petitioner. Affected her health adversely.
· Monthly expenses of Mr Brown: R4 220-00, including accommodation, medical aid, Old Mutual policies, school fees, etc.
· Petition: Increment in pension.
· Chairperson wrote to Ministry of Defence on 28 September 2000 to ascertain whether Department of Defence was in a position to augment petitioner's pension. (Letter not on record)
· Ministry replied on 13 October 2000 saying that it would investigate the matter and would contact Chair as soon as the response became available.
· Chair wrote to Ministry again on 26 October 2001, demanding a response by 29 October 2001. Letter faxed three times to Ministry. No response was received.
· Chair wrote to Ministry again on 9 November 2001, indicating that they would be required to appear before the Committee if no response was received by 12 November 2001.
· Response from Ministry of Defence received on 9 November 2001, indicating that the Department of Defence could not assist Mr Brown, and referring the Committee to the National Treasury.
SUMMARY: SPECIAL PETITION: Mrs M BOTHA:
1. Sponsor (Mr F Beukman) resubmitted petition to Speaker on 28 August 2000.
2. The petition (1995) had been supported by the previous Committee, the consequential legislation had been agreed to by the NA, but turned down by the NCOP. The reasons for this included the fact that the NCOP had never had provisions in its Rules for a committee dealing with special petitions, and when the National Treasury appeared before a review committee of the NCOP to decide on the petition, the committee members were informed that the National Treasury would not support the petition. Due to the general elections of 1999, the matter was not pursued and the legislation lapsed. Hence the new petition.
3. Petition screened by law advisers for constitutionality and meeting the requirements of a "special petition" in terms of Rules - 13 September 2001.
4. Documents relating to Speaker's approval of petition and referral to this Committee not in Committee Secretary's records.
5. Mrs Botha appeared before the Committee on 17 October 2001, together with the sponsor, to address the Committee and answer questions from members.
· Mrs M Botha started her nursing career in 1965, at the age of 23.
· She started working in "crisis areas" in 1964.
· She passed exams on nursing mental patients in 1965, with honours.
· In 1966 she received the Gold Medal from the SA Nursing Council for exceptional service.
· From 1967 onwards she assisted in lecturing nurses on psychiatry.
· In 1974 She was appointed Senior Matron: Out-patients and Community Services, at Valkenburg Hospital.
· In 1976 she did community nursing in the South Western Districts.
· In 1979 she returned to Valkenburg Hospital.
· According to her immediate supervisor Mrs Botha worked exceptionally long hours, was unusually productive, was well-liked by doctors, colleagues and patients alike. She took over responsibilities of staff on leave, stood in for her the Matron on several occasions, but also for other nurses and staff in clerical positions. Mrs Botha never left the office without ensuring that all work had been completed perfectly. Patients trusted her totally. She was able to persuade non-returning outpatients to come back for treatment, when no-one else was able to do so. Doctors enjoyed working with her when doing community work. Her workload was described as exceptional. She used her initiative to make the running of the administration office easier, etc.
· She took vacation leave from 24-11-80 to 3-01-81, and again from 1-05-81 to 31-08-81, when exhausted. She was treated for depression.
· At the end of 1981 Mrs Botha's supervisor noted that she had applied for early retirement on medical grounds. The rules provided that she would have to appear before a medical board, to make a decision whether she was medically unfit to work. Her application to appear before such a board was turned down, as one of the doctors whom she had to consult at the time was of the opinion that her condition was not that serious. Her application for early retirement was turned down.
· She started treatment with Dr Ben Wolpowitz, whom she trusted.
· She was granted sick leave from 13-04-82 to 14-05-82, and again from 17-05-82 to August 1982.
· She consulted doctors about her arthritis in May and June 1982.
· In 1982 her supervisor reported that although Mrs Botha was exhausted, depressed and in constant pain, her productivity never suffered.
· On 15 May 1982 she had an interview with Dr J Garrett, Medical Superintendent of Valkenburg Hospital, about her application for early retirement. He said that she had been granted a merit award, and should therefore not even mention that she was ill. She felt very aggrieved at this treatment.
· She was granted vacation leave from 17-05-82 to 31-08-82.
· At this stage she was taking sick leave more often, due to various physical complaints, as well as exhaustion and depression.
· She was told to leave the treatment of the doctor whom she trusted and to go to a Dr Zabouw.
· In 1982 she was allowed to consult the District Surgeon, the Head of Psychiatry at Tygerberg Hospital, with a view to possibly being allowed to appear before a medical board regarding her application for early retirement. One of the doctors found that she was suffering from a treatable condition, and that she should be hospitalised. Mrs Botha was not willing to be hospitalised, as she was already receiving treatment from a doctor whom she trusted (Dr Thomley). Her refusal to be hospitalised was recorded, however.
· In July 1982 she became suicidal. At this stage she was treated by a private psychiatrist, Dr Fay Thomley, who she said saved her life.
· Dr Garret wrote to her in July 1982 that her application for early retirement on medical grounds had been unsuccessful.
· She tried to work again, and moved into the nurses' home to avoid travelling the distance to and from work.
· In October 1982 Dr Garret wrote to say that the heads of the Health Department had indicated that her work performance was poor. She was also refused permission to stand in for the matron, etc. Mrs Botha felt that she was being victimised to an extent that working in that atmosphere had become intolerable. She was certain that her previous supervisors would have assisted her. The problem was that they had gone on early retirement themselves.
· In October 1982 a new dispensation for nursing staff was introduced, according to which Mrs Botha did not qualify for the new salary structure. She sought legal advice, which led to Mrs Botha's salary being adjusted.
· On 31 May 1983 Mrs Botha handed in her resignation, without mentioning her poor health as the reason for doing so.
7. Mrs Botha's husband took early retirement due to ill health (1976, with a monthly pension of R450). He now earns R4 000.
8. Mrs Botha has had surgery to relieve her physical problems.
9. She worked as nursing sister for three years at a retirement home, but had to stop three years ago due to her ill health. She did not receive a pension.
10. Her accommodation in the home costs her R1 400 per month.
11. Her income is derived from interest on an investment of R20 000.
12. In terms of the present policy for early retirement, instituted in 1993, her application for early retirement would very likely have been successful.
13. Mrs Botha is convinced that she was discriminated against when she applied for such retirement - other people's applications had been successful.
14. She had worked as nursing sister for the Department of Health for 27 years.
REQUEST FOR ASSISTANCE FROM PARLIAMENT FOR SEVERELY DISABLED
GRAHAM CHRISTIAN CLARKE.
Graham Christian Clarke has been living in an institution for the physically disabled since 1985 after having suffered a stroke at the age of 26 while working for the Department of Environmental Affairs on the remote Marion Island. He is appealing to parliament for assistance to supplement his current pension. He receives a civil pension that is R56935.44 p.a.
(R4 744.62pm). less than the amount he needs for the most basic care. The rent charged by the home he has to live in, is R6 535.44 p.a. more than this grant.
The weather station on Marion Island is used by the said Department for essential research, as is the case with Antarctica. The Department sends a team of 41 contract workers there for twelve to thirteen moths at a time. These people are volunteers who apply for the positions and are selected after strenuous tests. Because of the remoteness of the island and the lack of supporting infrastructure, the team members have to be highly skilled, responsible and devoted young men.
After having served on the island as ordinary member of the team on two expeditions, the department approached Graham Clarke to lead the expedition of 1984. According to the motivation to have him appointed, written by Mr. Sam Oosthuizen of the department he was an exceptional leader, completely versatile and one of the best members they ever sent to the Island.
Graham Clarke was appointed and consequently served as leader and paramedic of the team on the 41st expedition in 1984. After three months on the island he fell ill, experiencing exhaustion and acute headaches combined with nausea after a day out in the field where heavy snow made walking very difficult. This developed to slurred speech and vomiting and later he slipped into a coma.
There was no medically trained staff on the island and doctors in Pretoria were consulted by radio. They had to rely on information relayed by the team members on the island. The initial diagnosis was that he had contracted some form of meningitis brought about by sinus. Medical supplies on the island were very basic and limited and, as his condition worsened over the days, aeroplanes were sent to drop medication for the suspected menigitis on the island. He consequently began showing signs of developing pneumonia after which it was decided that he had to receive professional medical treatment as soon as possible. There are no landing facilities on the island, which meant he had to be rescued by navy ship.
Two doctors were sent along with the ship. Bad weather delayed the rescue operation and once they had him on the ship it was established that his condition was worse than originally thought. He also showed signs of developing quadriplegia. When the ship eventually returned to Cape Town Mr. Clarke was admitted to Tygerberg hospital more than ten days after he fell ill. After extended tests it was established that he had suffered a massive brain stem infarction (basically a stroke/thrombosis). He was totally paralysed from the nose down. This meant he could not move any of his limbs, swallow, or talk. (See medical report below.)
As his condition would be permanent Mr. Clarke, through his father, approached the Department for financial support. The request was rejected. The Commissioner of Workman's Compensation was also approached, but his decision was that Mr. Clarke did not suffer an injury caused by an incident while on duty and that legislation makes no provision for him to receive Workman's compensation. The Department felt they had no obligation to assist, as the expedition members were contract workers and not permanent staff.
It is important to note that the following was not taken into account:
- According to the Neurology Dept. at Tygerberg Hospital, there is medical evidence that accurate treatment within 48 hours after a stroke DOES improve the result of the stroke and so does early treatment in a Stroke unit. This would have been possible if Graham Clarke's workplace did not deny him treatment!
- Before he went on his third trip the department had medical warning that he did not meet the requirements concerning his health. During his medical check up at the army medical institute it was found that he had irregular blood pressure and a heart murmur was found. He was asked to see a private doctor. A physician in Durban confirmed the irregular blood pressure and a heart murmur. However after seeing several doctors at the institute, it was decided by the Department that he was fit enough to go. (This has since proved to be an extremely unfortunate decision that reduced the life of a young leader to someone who has to be strapped into a wheel chair as he cannot hold his own body upright and is totally dependent on carers.) Three months after this medical examination he suffered the stroke.
- Stress is an important contributor to this condition and the only stress he suffered at the time was job-related and brought about by the extremely dangerous working conditions.
- There is no evidence that his impairment would not have been less serious if he had immediate access to medical attention and hospitalisation.
2 Medical report on his condition published the SA Medical Journal in 1986. "Locked-in" but not "Locked-out"
2 Medical report on his condition published the SA Medical Journal in 1986.
"Locked-in" but not "Locked-out"
A case report
A. S. DE GRAAF, MERYL. D. RYBNIKAR
Summary: The application of modern electronic apparatus in-patients with the 'locked-in' syndrome can significantly improve communication. South African Medical Journal vol. 69 21 June 1986
The term 'locked-in' syndrome was introduced by Plum and Posner' in 1966 and since then has been generally accepted as a clinical concept. It describes a selectively de-afferented state of lower cranial and spinal cord neurons while leaving consciousness preserved. In most cases the only means of communication is by vertical eye movements and blinking.
Although most patients die after a cerebrovascular accident causing this syndrome, partial recovery with years of survival has been reported. As mental functions are fully preserved it is of paramount importance to establish some form of communication as soon as possible.
Although many papers on the 'locked-in' syndrome have appeared, scant attention has been paid to its management. Electronic, computerised devices can significantly contribute to the patient's well being. Attention is drawn to this aspect of management.
Case report A 25-year-old man was transferred from a South Antarctica Island weather station to the intensive care unit of Tygerberg Hospital. A detailed history was not available but it was learnt that his initial symptoms had appeared about 10 days before admission. He had developed a headache and slurred speech, and had the later become anarthric. This was followed by quadriplegia, urinary incontinence, and inability to swallow.
On arrival this strongly built and overweight male was mute, and only able to react to questions by blinking his eyes. His consciousness was somewhat decreased, pupils were equal and reactive, fundi normal, eye movements full and the corneal reflexes present and equal. Frowning was seen when emotionally upset or in pain, and vocalisation was a groan when crying. No voluntary movement below the upper face could be elicited. Sensation appeared to be largely intact. There was a flaccid paraplegia and urinary incontinence. Except for bronchopneumonia, further physical examination was normal; the blood pressure was 130/90 mmHg.
A tracheostomy was performed because of swallowing difficulties. Nutrition was provided by nasogastric tube, a urinary catheter was inserted and intensive physiotherapy and occupational therapy started.
Neurology Unit and Department of Occupational Therapy, University of Stellenbosch and Tygerberg hospital, Parow-vallei,
A. S. DE GRAAF md
MERYL D. RYBNIKAR, dot
Although sleep was not recorded polygraphically it appeared to he normal.
Except for heavy cigarette smoking and a strong family history of heart attacks and varicose veins, the patient's previous medical history was unremarkable.
Results of the following laboratory tests were normal: full blood count, erythrocyte sedimentation rate, serum electrolytes, hepatic and renal function tests, lipogram, CSF analysis, and aerological tests. Serum electrophoresis showed an acute-phase reaction, probably due to the bronchopneumonia. Blood coagulation studies were compatible with an acute stress reaction. ECG, echocardiogram, EEG, brainstem auditory evoked potentials and somatosensory evoked potentials were within normal limits. Computed tomography revealed an area of decreased density centrally located in the pons. Vertebral angiography disclosed a complete occlusion of the proximal basiliar artery. The vertebral arteries were patent.
During the following weeks spasticity, with both increased and pathological reflexes including an increased jaw jerk, developed. About a fortnight after the initial symptoms he could snake lateral movements with his head and lift it slightly from the pillow.
Rehabilitation could only involve the senses, information processing, voluntary eye and head movements. Based on these facts, an intensive therapeutic programme was developed.
'Interface', a new association recently formed In Cope Town with the aim of enhancing the quality of life for the mentally or physically handicapped by adapting computers, was contacted.
A BBC computer and disc drive was lent to the patient, specific software written and an interface made, the minimum number of movements required to control the computer being two.
An occupational therapist designed a harness to facilitate activation of the microswitches by the mandible. The switches needed to be static as they responded to very light pressure. The harness allowed lateral head movements, while eye contact with the monitor was not lost, thus minimising eye muscle strain (Fig. 1). The initial program (the alphabet) needed re-evaluation within a week, because it was too slow and therefore frustrating.
A record program was written, using the patient's ideas. Morse code was considered too slow and was not attempted. Other systems were not available, e.g. the long-range optical pointer.
The approach to the patient was very important since he did not yet fully realise the extent of his physical disability and the consequences. The idea of communicating through a computer was discussed over a few days and the need for adaptation explained.
The adapted computer enabled the patient to state his problems as they occurred and he was therefore able to obtain the appropriate help and therapy without delay, and to start working through his emotional reaction to his physical state towards self-acceptance. Thought content improved from 'They [the nurses) are nice' to 'Please do not talk when I am working on the computer' to precise instructions about how to change the software program.
One of the initial problems was hypertonus which built up to flexor spasms towards evening. This was alleviated through expression of emotion, the ability to indicate needs and neurodevelopmental techniques.
While using the computer, the patient had a tendency to flex his head and therefore increase flexor tone in the arms. The head position was carefully monitored to prevent this.
Within three weeks, endurance improved from 15 minutes to 40 minutes twice a day. The pace of the treatment was set by the patient. Previously there was a passive acceptance of all therapy and medical care. Now there was the stimulation of being able to exert control, self-expression and communication, which gave a more positive approach towards future planning the ability to help others through trying out equipment and systems gave self-confidence and improved self-image. Improvements were also noted in posture and control of voluntary movement.
The patient was then transferred to a hospital nearer his home. Future planning included wheelchair control, specific software programs to state needs or thoughts, a printer to encourage correspondence, increased access to computer control resulting in personal independence where possible and, ultimately, environmental control. Self-study and possible employment was a long-term project for the future.
A 'locked-in' state is the result of one or more strategically placed lesions in the intracranial pathways. Most lesions are localised at the pontine base because of basilar artery occlusion or critically placed infarcts in the pontine basis. Bilateral peduncular infarcts and selective bilateral defects in the posterior part of the internal capsule and genu have also been documented as causative factors. Causes other than infarcts have rarely been described; among these are: haemorrhage, abscess, central pontine myelinolysis, heroin abuse, and trauma. Polyradiculoneuropathy, myasthenia gravis and the terminal stages of motor neuron disease may also produce a 'locked-in' syndrome.
In our patient thrombosis of the proximal part of a diseased basilar artery was thought to be the cause of his condition because of the gradual onset and lack of evidence for a source of embolism. This is in agreement with the report of Costaigne et al.on basilar occlusions, 94,4% of which resulted from atherosclerotic thrombosis.
After basilar artery occlusion the development of a stable collateral circulation is crucial. This is largely dependent on the anatomy and patency of the vascular system and its anomalies.
In order to overcome ischaemia of the posterior circulation during the first critical weeks, treatment in the supine position has been recommended, specifically for subjects with fluctuating signs.
Opinions on the use of anticoagulants and drugs which decrease platelet aggregation are still divided. During the first few weeks elementary questions can only be answered by eye blinking and eye movements. Morse code signalling in later stages has been successfully applied in isolated cases. In less critically placed lesions, eye and perhaps head movements provide additional possibilities. Among the factors influencing the final therapeutic achievements are the patient's personality, intellect, mood and interests.
Sensitivity to the patient's needs is required from the medical and paramedical staff and the family.
Modern electronic technology can provide an ever-increasing range of specially adapted devices.
Since submission of this article practical improvements in the alphabet were introduced; technical procedures facilitating its reading are in progress and the patient is starting and driving his wheelchair by electronic devices connected to his chin.
The authors wish to thank Miss R. van der Walt and Mr C. Joubert of 'Interface' for their knowledge, time and devotion to make the programs a success, our patient for his enthusiasm and determination, and Mrs A. Allen for secretarial services.
3 Medical Cover
3 Medical Cover
During a meeting to discuss passports, power of attorney etc. before his first trip to Marion Island the new members were told by a representative of the Department that medical cover was unnecessary. Before Graham left on his second trip, he was advised to take out medical cover while doing team training as he was travelling a lot. He joined the Public Servants Medical Aid Association (PSMAA). Monthly deductions were made while he was on Marion Island but ceased once he returned to South Africa as his contract with the department had expired. As far as can be established this paid for his hospitalisation when he was moved to a Durban hospital. All support ceased when Graham was discharged from hospital.
Graham's late father negotiated with the pensions department and "bought back" pension in order to assure Graham of a "reasonable" monthly pension for the rest of his life. This pension however, is substantially below his rent. The monthly civil pension is R1755.38 while the rent at the Cheshire Home is R2 300.00. (It is important to note that at the time there were only three institutions in the country that were prepared to accommodate Mr. Clarke because of his severe disability.) As his father who handled Graham's financial and administrative matters at the time, is now deceased, it is difficult to obtain full and accurate information on who carried what part of the expenses at the time.
4 Care required.
4 Care required.
Clarke has complete quadriplegia. He is paralysed from underneath the nose. He does have some neck movement, which means he can drive a motorised wheelchair with his chin. He is unable to speak but communicates by using an American computer (a Liberator) that is attached to his wheelchair. He operates the computer by pointing a light pointer attached to a cap on his head.
These two devices are absolutely essential for him to live a reasonably dignified life. Both are old and outdated, but costly pieces of equipment. It will cost about R25 000 to replace his existing wheel chair while a communication device like the Liberator would cost in excess of R80 000. As he cannot speak, the Liberator or a similar device is absolutely essential. It also enables him to operate a personal computer of about R10 000 that allows him communication with the outside world and other non-speakers and their organisations through the Internet. He does a lot of counselling in this way and is often asked by the University of Cape Town to assist with their patients. (See attached e-mail from Dr. Boonzaaier from UCT below.) Graham does not receive renumeration for this and sees it as his moral duty to help other non-speakers.
The personal care he requires is extremely intense. Showering, bed baths, feeding, drinking, lifting in and out of the wheelchair/bed, night care and miscellaneous chores throughout the day/night. He requires a permanent person/carer in his surroundings.
He currently resides in the Cheshire Home in Milnerton. It is a home with forty-five physically disabled residents. As intellectual stimulation is a problem, Graham's dream is to leave this environment and live independently out of an institution. If he can buy a vehicle into which he can drive with his chair, like a Volkswagen Kombi, he will be able to pursue a career and work with non-talkers and people in rehabilitation full time. He is especially interested in working with disabled children and has already made a difference in helping staff at the Vista Nova School for the disabled, Interface (an organisation that works with augmentative and alternate communicators) and the University of Cape Town Speech Therapy Department. Unfortunately he is cloistered to the home he lives is as he has no means of transport to visit patients.
5 Financial Situation
5 Financial Situation
R27 600.00 (R2300pm)
Light pointing wires, charging wires for the Liberator etc
Insurance of essential equipment
Day to day personal costs. (Clothes, toiletries, medication, medical equipment, etc.) @ R600 p.m.
Batteries for wheelchair
Telephone and Internet
(ONLY 4 X 10km. trips per month.)
Salaries (Add. Staff)
Please note that the above is a conservative calculation and does not include any normal recreational activities like visiting the cinema, etc. It also does not include replacing his essential equipment. Especially his wheelchair is very old and will soon need to be replaced. His mother has been able to make some contribution. However she is now quite elderly (78) and might not be able to do this for much longer. Graham Clarke was an exceptional young man who was very highly recommended by his superiors for the sought after position of leader to Marion Island. This able bodied, hard working young leader of 26 had the potential to become an independent and successful person who would have been able to make an important contribution. It is impossible to determine what his state might have been if he had received medical treatment immediately. He is now entirely dependent on people. His only undisabled faculty is his brain, which is clear and alert. This unfortunately increases the intensity of frustration. He needs staff, equipment and technology to live. His days are filled with humiliation, frustration and limitation in an institution. A better income would allow this brave man who served the Department of Environmental Affairs with distinction to regain some dignity and would empower him to again make a vontribution. We therefore request that this submission be considered with great empathy. Letter from Dr. David Boonzaaier Subject: Your professional help Although the presented document concerning the financial situation was created in February 2001, the initial research and costing was done in June of 2000. Since then there has been a substantial increase (R2400 per annum) in the Cheshire Home rent. As you will appreciate, other expenses have also increased.
I went to see an AAC client in Stellenbosch on Friday. A Mr Nico
Visser, a builder, who is 35ish. He has MND and has been
deteriorating for the last 3 years - albeit slowly and atypically so.
He now communicates by very soft and quite dysarthric whispers and
types on his computer with a mouth-stick.
He desperately needs a conversational and I think would benefit from
a Liberator/Vanguard -level device, as he is completely cognatively
able and very enthusiastic.
I know that he would benefit from your wise counsel and personal
experience. I'd really appreciate your support.
All the best
Dr David Boonzaier
Director: Rehabilitation Technology
& Augmentative and Alternative Communication
Department of Human Biology
Faculty of Health Sciences
University of Cape Town
ADDENDUM: PETITION-GRAHAM CLARKE
Please note that the above is a conservative calculation and does not include any normal recreational activities like visiting the cinema, etc. It also does not include replacing his essential equipment. Especially his wheelchair is very old and will soon need to be replaced.
His mother has been able to make some contribution. However she is now quite elderly (78) and might not be able to do this for much longer.
Graham Clarke was an exceptional young man who was very highly recommended by his superiors for the sought after position of leader to Marion Island. This able bodied, hard working young leader of 26 had the potential to become an independent and successful person who would have been able to make an important contribution. It is impossible to determine what his state might have been if he had received medical treatment immediately.
He is now entirely dependent on people. His only undisabled faculty is his brain, which is clear and alert. This unfortunately increases the intensity of frustration. He needs staff, equipment and technology to live. His days are filled with humiliation, frustration and limitation in an institution. A better income would allow this brave man who served the Department of Environmental Affairs with distinction to regain some dignity and would empower him to again make a vontribution. We therefore request that this submission be considered with great empathy.
Letter from Dr. David Boonzaaier
Subject: Your professional help
Although the presented document concerning the financial situation was created in February 2001, the initial research and costing was done in June of 2000. Since then there has been a substantial increase (R2400 per annum) in the Cheshire Home rent. As you will appreciate, other expenses have also increased.
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