Letter from President Reoch ~ 9-30-2006

Dear Friends,

A while ago there were a number of messages expressing concern about the continuing care of Tagtrug Mukpo, eldest son of the Vidyadhara Chogyam Trungpa Rinpoche. I am pleased to be able to send you the following detailed message from the Taggie Support Group, which will fill you in on the work they are doing, the current plans for his care and the support they need in order to sustain the special care he needs.

Although the following message is long (because of the detail it includes), I urge you to take the time to read it! I would be delighted if you could contribute in whatever way you can to Taggie's well-being.

With every best wish,
Richard Reoch
President of Shambhala

Message for sangha-announce:

The Tagtrug Mukpo Support Team
Summer 2006 Care and Care Team Update

As a child, Tagtrug Mukpo, eldest son of the Vidyadhara Chogyam Trungpa Rinpoche and Lady Diana Mukpo, was recognized as a tulku by His Holiness the 16th Gyalwa Karmapa. Since he was a child, Taggie has needed round the clock care, and eventually he was diagnosed as having autism. A detailed history can be found on taggiemukpo.org but the short version is that after numerous situations had been tried (including several attempts by his mother to maintain him at home) his condition only finally began to stabilize fifteen years ago when he moved into Bhumi Pali Bhavan (BPB), a farmhouse near Karme Choling where his father stayed when he taught there.

As Matthew Nowakowski, Taggie's former legal guardian, puts it, “Having been involved with Taggie since 1991, I have seen much change and confusion around his care. In my opinion, Taggie's care is the responsibility of the Mukpo Clan, in which I include myself, which is why I work as a care-person for Taggie. I see and hear of people's concerns that things are not being done for Taggie that should be. As a caregiver, I have not seen this. What I do see is much hard work being put in by people to keep things going. I see all of us doing what we know how to do and doing it in our own way. We are different and we have our differences, but we are working on the same team.”

The last few years have seen real improvement. Mr. Nowakowski continues, “Taggie is doing the best I have seen him. He has been communicating in reasonable ways more. At times it feels like one day we might be able to have a conversation. The fight that we lived with seven or eight years ago is gone, and things are feeling relaxed compared to how they were. I have to admit it's getting better, a little better all the time' is what we have now due to consistency and hard work.”

Like all karmically intense situations, this one has provoked its share of deep questioning, and some of those questions have been about the role of the family. Lady Diana offered a statement, previously printed in The Dot and now posted on Taggie's website. A portion of it reads: “The Mukpo family contributes modestly to the yearly cost of care for Taggie Mukpo. The family made the decision a number of years ago to allow the state of Vermont to appoint a legal guardian for Taggie. He needed someone to act on his behalf when the family decided to give up their legal guardianship of Taggie. This was necessary so that Taggie could receive financial support from the state of Vermont . This occurred because the family felt that they had neither the financial means to pay for his full care nor did they have the expertise to provide what was needed for Taggie in a family setting.”

Taggie's legal guardianship has been held by a number of sangha members over the years. In July 2003, Susan Taney, MSN, ANP, a long-time member of the sangha and kasung who had served as Taggie's medical case manager for three years, took over this position from Mr. Nowakowski as part of a re-structuring of Taggie's care plan and the financial support system for it. For years Karme Choling had contributed almost $100,000 annually to his care, a level of support that became impossible to maintain as the center faced overwhelming financial difficulties, along with the central services of Shambhala. Additionally, in 2002, the organization received tax advice that it could not continue that support.

Since it was, therefore, no longer possible or legal for Karme Choling to support Taggie, and since it was essential to find a new way to fund his care, the Sakyong gave his blessing to a new structure that would do this. In January 2003, The Tagtrug Mukpo Support Team was formed, a group of five volunteers committed to maintaining appropriate care for Taggie in the changing financial environment. A few months later, as a vehicle to receive funds toward the $108,000 annual cost of Taggie's ongoing care, Lady Diana Mukpo and the Lamen Mitchell Levy funded the establishment of a special needs trust, The Tagtrug Mukpo Trust of 2003.

Ms. Taney worked with Vermont state officials and was able to obtain a Medicaid waiver for Taggie, meaning that the state and federal governments now provide approximately $66,000 a year for his support. This is the highest amount of annual government funding allowed in Vermont for a developmentally delayed individual. The Trust's goal, to keep the current care model operating, is to raise $42,000 annually. The Trust has thus far attracted donations averaging $13,000 a year. An initial large gift of support from Sakyong Mipham Rinpoche enabled us to meet the deficit for the first two years, but those funds have been exhausted. The family has provided about a third of the ongoing funding the Trust has received to date and has recently pledged to double their contribution.

Projects to benefit Taggie have also been initiated: Ms. Taney donates all net proceeds from her sale of Pharmaceutical Grade Vitamins at susantaney.net to Taggie's Trust, and sangha member Gerry Haase has offered all proceeds from the sale of reproductions of a beautiful Gesar of Ling thangka that he commissioned for the marriage of the Sakyong and Khandro Tseyang. These are welcome initiatives which will help to meet the $29,000 additional funding needed annually. Other large and small ongoing contributions will be required, however, if we are to maintain the status quo, which has two major components: Taggie's home and the model of care provided by his care team.

The stability and continuity provided by having BPB as his home has benefited Taggie immeasurably and it will remain his primary residence. However, as he has for more than ten years, Taggie will continue to spend between three and four days a week, including overnight, in the homes of his care providers. This has been good for Taggie from a socialization point of view in the past and continues to be so.

The care model shifted in 2003 when the state of Vermont issued the Medicaid waiver. At that time, Edwin Glenn, a sangha member who had worked with Taggie for ten years, assumed the role of Shared Living Provider (SLP), a Vermont state program supporting developmentally delayed individuals in private residences. Under this program, the SLP normally takes the client into his or her home; funds are provided for day care and respite workers. Because the state's social worker was impressed with Taggie's care, he was allowed to continue living in BPB while Mr. Glenn lived in the house next door.

This summer Mr. Glenn resigned his positions, stopping direct care services on August 1st and his SLP position September 1st. John Neilon, a direct care service provider for Taggie for two years, took on the SLP role as of that date. He will continue to provide two or three days of direct care each week, as well as assuming the SLP administrative duties and team leadership. Taggie has his own room at Mr. Neilon's house in Westmore , Vermont , where he stays when Mr. Neilon does direct care, and has responded well to being around Mr. Neilon's one-year-old child and wife, socialization in the family environment being good for him. Although Mr. Neilon is not a sangha member, he frequently takes Taggie to lunch at Karme Choling and views the Buddhist community as an important connection for Taggie. “I am glad to be on board and working with Taggie, and would like to thank Ed Glenn for his years of work and for making the transition so easy based on the program he and others put in place. I look forward to the new challenges.” Mr. Neilon invites anyone who is interested to contact him directly. His contact information is listed at the end of this letter.

North East Kingdom Human Services (the state agency that oversees funding from the state for the SLP), the Tagtrug Mukpo Support Team, and Taggie's direct care service providers are committed to maintaining stability and continuity while exploring how to improve his care plan consistent with his normal slow progress. Mr. Nowakowski has been employed by the Trust for the last two years to provide direct care services two and a half twenty-four hour days a week. Approximately 20% of the Trust's budget each year is for rent and other costs of the residence at BPB; the balance goes toward the cost of employing Mr. Nowakowski. Although it had been thought that the Trust would not be able to afford to continue his employment at the current rate beyond September 1st, a recent offer by a sangha member to be personally responsible for six more months of funding either by raising or donating it himself has provided a respite from the prospect of letting Mr. Nowakowski go; however, if ongoing funding cannot be secured from sangha and friends, his continued employment will not be financially viable.

The Trust's annual mailing (and a community gathering and fund raising party this spring), while meeting with appreciation and support, failed to produce major additional funds. If the Trust continues to fall as short of its fundraising goals as we have over the past two years, it means that Taggie would probably need to move into the more typical model in the state of Vermont for the SLP program: he would live in the home of an SLP and have community support workers come in four hours each weekday, with respite care on some weekends. Taggie's present care features some of these elements but includes more consistent and continuous care.

We have no idea how Taggie would acclimate to this model. We do know that any abrupt change is difficult for him and that his stability and well-being are highly dependent on well-trained and consistent caregivers. As long as Ms. Taney remains Taggie's legal guardian, we have some control over his care. However, if we were no longer able to care for him as we do now, there would be extremely serious consequences and our influence would be minimal. If he were unable to stay in the SLP program, he would no longer live in a private residence, and if he were to be cared for wholly by the state in a group home, then the state would become his legal guardian. Such a living situation could undermine his slowly gained progress and require that he have more medication and sedation, leading to a greatly reduced quality of life.

The Tagtrug Mukpo Support Team is committed to maintaining a healthy and wholesome environment for Taggie. We see providing continuity in caregivers, access to a familiar residence, and a consistent daily schedule as important in this transition phase, which will help Taggie maintain the stability he has achieved while we look for opportunities for him to grow in the areas of language, socialization, and perhaps even some employment programs. Well-considered and implemented evolution of his overall care plan will help avoid stagnation for Taggie, but only if we can raise adequate funds to support these efforts.

If you want to help sustain Taggie's well-being, the most pressing need is for money. Long time sangha members and close students of the Vidyadhara Gerry Haase and Olive Colon have stepped forward to lead a personal fundraising initiative; their contact information is below. Please note that donations are not tax deductible because they are for an individual.

The Support Team appreciates the effort on Taggie's behalf extended by Chuck Lief, who is stepping down from active involvement in the team after several years of service. If you are interested in working with the team, please contact Michael Greenleaf. Ms. Taney already has a small group of professionals with whom she consults on care plan issues; if you have expertise you would like to share, please contact her. Also, we are looking for people who either have experience working with autistic people or feel a connection with Taggie and who might want to move to Vermont and become part of Taggie's care team. If you are interested, please contact Ms. Taney. Please contact any of the Tagtrug Mukpo Support Team members if you have any questions or comments.

The Mukpo-Levy family is in close touch with the Support Team during this period, and Ashoka Mukpo and Gesar Mukpo have offered to help with fundraising initiatives to ensure Taggie's well-being and continuity of care. The Support Team greatly appreciates people's concern for Taggie and warmly invites all members of the clan, sangha, and friends to help us maintain the best environment possible for this very special member of the Mukpo clan.

Respectfully submitted,

The Tagtrug Mukpo Support Team

Susan Taney, MSN, ANP ~ susantaney@susantaney.net>
Michael Greenleaf ~ GOMDEN@aol.com
Suzann Duquette ~ duquette@shambhala.org
Carol Hyman ~ shambhala@mirrorpro.com

Fundraising Contacts:

Gerry Haase ~ GERRYHAASE@ aol.com
Olive Colon ~ olivecolon@yahoo.com

Care Team:

John Neilon ~ sj@ipwisp.net (802) 723-5678
Matt Nowakowski ~ profmnow@polishluck.com

Ian Cunningham
PO Box 47
East Burke, VT 05832