Home > Uncategorized > Guardianship under fire by the same groups that oppose congregate care and support privatization

Guardianship under fire by the same groups that oppose congregate care and support privatization

Guardianship of persons with developmental disabilities is under fire in Massachusetts and elsewhere, and families could see their advocacy rights eroded as a result.

One prominent threat to guardianship appears to be embodied in a process called Supported Decision Making (SDM).

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas. The network supporters can include family members, friends, and corporate service providers, according to the Center for Public Representation, which is pushing for SDM in Massachusetts. 

There are some promising aspects to SDM, but a number of concerning aspects as well.

To the extent that it can or does replace irresponsible or uncaring guardians with supportive teams, SDM would appear to have a potential to improve the lives of many people.

On the concerning side, SDM does not appear to be well designed for people with severe levels of disability.  Those people are most in need of the protections of guardianship; yet, many SDM advocates paint guardianship with a broad, negative brush and don’t appear to acknowledge the value that family members, in particular, bring as guardians to the lives of their loved ones.

As Jill Barker notes in the Michigan-based DD News Blog:

Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible.

Moreover, many of those SDM advocates appear to be from the same groups that have long opposed critically important congregate-care options for the developmentally disabled, and their language in support of SDM is similar to their longstanding ideological language in opposition to congregate care.  In particular, they make the same questionable charges about guardianship that they have about congregate care — that guardianship leads to “segregation,” and that all persons under guardianship are prevented from “reaching their potential.”

We believe that like congregate care, guardianship is a necessary part of the total spectrum of care, particularly for people with the most severe levels of developmental disability, and that those choices and options shouldn’t be taken away from disabled individuals and their families.

As a result, we counsel parents of developmentally disabled children to consider obtaining guardianship rights when their child reaches the age of 18.  Without such rights, family members are likely to have virtually no say in the decisions that are made by providers and the Department of Developmental Services with regard to their loved ones with developmental disabilities.

In a position paper on SDM, the VOR, a national advocacy organization for people with developmental disabilities and a COFAR affiliate, contends that SDM “could weaken protections for those who are the most vulnerable, the very people for whom guardianship laws were originally written.”  The VOR adds that SDM threatens “to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation.”

Similar groups and similar language against guardianship and congregate care

The CPR and similar advocacy organizations in other states favor reducing residential options and choices, particularly when it comes to congregate care, and they use similar arguments to support the replacement of guardianship with SDM.

The CPR has supported or been involved in numerous lawsuits to close developmental centers over the objections of families of residents. Their argument has been that clinical experts know better than family members about what is in the best interest of their loved ones. Those advocates also support the dismantling of sheltered workshops and the privatization of residential services for the developmentally disabled.

The CPR is now making similar questionable claims against guardianship and in favor of SDM. In a PowerPoint presentation delivered in 2014, the CPR maintained that guardianship results in “civil death” for developmentally disabled persons, and that a key principle of SDM is that “people are not inherently incompetent.”

That latter claim, which has also been made in opposition to congregate care, seems absurd to us if it means that no individual can be found to be incompetent.  Laws in Massachusetts and most other states require that people be found incompetent by courts in order to be considered for guardianship. If SDM advocates believe that no one is truly incompetent, then they must believe court rulings around the country involving thousands upon thousands of people were wrong. We don’t believe it’s possible that all, or even most, of those decisions were wrong.

Nevertheless, in a law journal article, SDM-proponent Leslie Salzman includes the following statement, which includes no citation, in a footnote:

Virtually everyone has the ability to participate in the decisions affecting his or her life, with the possible exceptions of persons who are comatose or in a persistent vegetative state. (my emphasis)

The CPR does acknowledge that some things about guardianship are good.  In the 2014 PowerPoint, the CPR states that guardianship “offers a form of protection and provides some safeguards against abuse,” and that guardianship “makes it clear who is the ‘decider.’”  But the CPR goes on to claim that guardianship results in a “loss of legal personhood” and a loss of civil rights such as the right to marry and vote.  And the CPR contends that guardianship leads to possible exploitation by the guardian.

We disagree with the CPR’s claims.  First, it does not appear to be true that a person under guardianship can’t vote. According to the Handbook for Massachusetts Guardians, which is published by the Massachusetts Guardianship Association, some incapacitated persons may have sufficient capacity to marry or vote.  In those cases, the guardian can seek the court’s approval for such actions.

Also, as the Massachusetts handbook notes, current state law provides a number of protections for persons under guardianship and encourages limited guardianships when possible.  Among the legal protections in place now is a requirement that guardians seek court authorization to make many major decisions for the incapacitated person – for example, admitting someone to a nursing facility for long-term care.  The guardianship handbook further advises guardians to act in the incapacitated person’s best interest at all times, to do what that person desires to do, and to visit them at least monthly.

While it’s true that guardians can potentially exploit incapacitated people in their care, we are not sure that exploitation is less likely with SDM.  If corporate providers, in particular, are on the SDM “network” teams, then there is a potential conflict of interest involved, since providers stand to make money by advocating for more services.

Barker points out in the DD News Blog that “guardianship abuse from family members can occur,” but she draws a crucial distinction — which SDM advocates appear to ignore — between the appointment of family members as guardians, and the appointment of attorneys, corporate entities and other professionals to that role.  Family members, Baker states, are far more likely to attend to the needs and wishes of their loved ones under guardianship than are corporate or state guardians “with dozens of wards.”

Barker, who is critical of the SDM movement, adds:

Although there are horrific stories about what can happen to people under guardianship, we rarely see stories about unpaid family guardians who defend their family members against agencies and individuals who, through neglect or the intentional desire to do harm or simply to save money, exploit vulnerable people with disabilities.

We’ve witnessed this type of family support in many, many cases, such as that of Stan McDonald, who stopped clinicians and providers from giving unnecessary and dangerous anti-psychotic medications to his son, Andy.

Confusing the causes of isolation

In the law journal article, Salzman brings up many of the same arguments against guardianship that the CPR and the providers have used against congregate care, including the segregation charge.  But she doesn’t appear to distinguish between degrees of intellectual or developmental disability.

For instance, Salzman states that when an incapacitated person loses their decision-making power to a guardian, they experience feelings of isolation and helplessness, which leads to a further loss in functional abilities in a “vicious cycle.” But while this might be true for relatively high-functioning persons, it is certainly less true for lower-functioning individuals.  And it incorrectly assumes that all guardians, including family members, act as dictators and don’t solicit or take into account their wards’ wishes.

Salzman also appears to identify the wrong causes of the isolation she refers to.  She argues that persons with developmental disabilities feel isolation due to guardianship and to living in large institutions. But we have found that the isolation felt by these individuals is not due to guardianship or living in institutions, but actually to living in community-based settings.

There is often little real community integration in these privatized settings despite their being characterized as community-based. Unfortunately, there are usually few if any other choices available to guardians among residential settings because so many congregate-care settings have now been shut down and because states like Massachusetts fail to inform people waiting for residential placements of either congregate-care or state-operated sites that remain.

The lack of congregate-care options combined with the privatization of residential care appear to have actually increased the isolation of both individuals with disabilities and their families. Family-supported networking organizations have disappeared as developmental centers have been shut down.  People with developmental disabilities are often trapped in group homes in which they are rarely taken out into the community.

In Connecticut, families have lately protested  the planned privatization of state-run group homes, with one family filing a lawsuit to preserve their current facilities.  There are huge amounts of money to be made in privatization, in particular, and families seem to get in the way of that process.

As we noted, SDM may well work for high-functioning people, but we believe there would nevertheless have to be strict controls on it. We think that means, at the least, that corporate providers should not be permitted on the SDM “network” teams.

For lower-functioning people, our concern is that even if family members enter into SDM voluntarily, they may not realize that their decision-making power may well be diluted under those circumstances. Why would a family member want to agree to be just one vote on a team when it comes to the care of a son, daughter, brother, or sister?  We are all for limited guardianships when appropriate, but that team approach doesn’t make sense to us unless it is clear that the family member has the final say in all decisions.

Rather than eliminating guardianship, it would seem we should continue to work to improve the system, particularly for incapacitated individuals and their families. One reform is to ensure that attorneys are appointed to represent all individuals under guardianship if it is requested.  Another is for the Legislature to finally pass Stan McDonald’s bill that presumes family members to be the most suitable guardians for their loved ones.

  1. Denise Lombardi
    September 30, 2016 at 7:05 pm

    Similar to how the first feminist movement catered to privileged white women often at the expense of minority women, we are in the midst of a disability movement that caters to the least affected at the expense of the most severely intellectually & developmentally disabled. Families of those individuals legitimately in need of guardianship, those who would likely “rot with their rights on”, are mere obstacles to be set aside by polemicists who hold to the ideology of full inclusion.


  2. Tammie Parker
    October 1, 2016 at 4:04 pm

    Thanks for this information. It’s quite alarming to say the least. As a sibling/Guardian of my 63 Year old, multi diagnosed developmentally disabled , older sister who has lived all my life and most of hers, in a “congregate care facility” I fight these kind of ill conceived notions daily. Our parents did for the past 63 years.
    Her home is wonderful and direct care staff excellent. Her community covers a wide , well rounded, least restrictive setting. She is close to me , our elderly Dad as well as many long-term house mates. This could not be duplicated in a group home.


  3. Sue Surette
    October 2, 2016 at 9:22 pm

    Thanks for this information. I really don’t get any of this…..what is it…..do people just sit around coming up these ideas? Maybe its a government thing….always have to a group or a committee to do something which actually does nothing. And we are supposed to let this group make life affecting decisions for someone they don’t know……right.

    Once I read “Virtually everyone has the ability to participate in the decisions affecting his or her life,” and “loss of legal personhood” really didn’t have to go any further because I immediately realize these supposed experts, or whatever their claim to fame is, don’t have a clue. After years of fighting for “one size does not fit all” seems we are back to painting everyone one with that same old broad brush.

    Lets be real honest here, when you make those broad statements and presume to speak for all the disabled, they have already “lost his legal personhood”.


    • Maureen Shea
      January 17, 2019 at 10:02 am

      I agree with you 100% , it’s just a way to s
      Dumb down on persons with disabilities basic human rights!!! This is setting us back years where this special population are thought of, and treated with no rights! Sure there are a few guardians who are not appropriate, but there is NO one like family who loves their children the most. I’ve seen it, I’ve lived it! This would certainly save residential homes money and less meetings for parents when dangerous events happen in those homes, no more checks and balances !!! This is inhuman


  4. Sue Surette
    October 2, 2016 at 9:53 pm

    Thanks for keeping us informed Dave.

    I really don’t get any of this. What is it….do people just sit around coming up with these ideas. Maybe is a government thing, they always do things in groups or committee, that ultimately don’t do anything. We are all supposed to turn over our guardianship to them…..right.

    Once I read that “Virtually everyone has the ability to participate in the decisions affecting his or her life” and “lost his legal personhood” didn’t really have to go any further. Its obvious they don’t have a clue.

    After years of fighting for “one size does not fit all” it seems we are right back to painting all the mentally disabled with the same broad brush.

    Let me real honest here, when these supposed experts or whatever their claim to fame is, make such statements and presume to speak for someone, these individuals have already “lost his legal personhood”.


    • October 3, 2016 at 12:43 am

      Sue, I agree with you that many of the SDM proponents seem to be making broad generalizations about the developmentally disabled, even if those generalizations may appear to be positive, e.g., all developmentally disabled people are able to participate in the decisions affecting their lives. That is still a generalization, and the people making it are guilty of the very thing they’re accusing guardians of — taking away the personhood of actual individuals whose abilities vary widely.

      It seems to me this isn’t a government thing per se — it’s being pushed by many of the same groups that support privatized services. But a potential for getting government money always seems to be involved in these initiatives.


  5. gail giles
    October 3, 2016 at 6:57 pm

    i admit, I didn’t even finish tihis article I was so mad. there needs to be guardians and very vested representatives from a personal perspective at every service meeting. there are enough laws in place limiting those who care to be involved.


    • Sue Surette
      October 3, 2016 at 8:13 pm

      Well said and I couldn’t agree more.

      I also immediately thought (and I know I am being pretty petty) – but where were all of these people when the parents/guardians were going thru the battles of trying to get services from DDS?

      It never seems to end.


      • gail giles
        October 3, 2016 at 8:24 pm

        I think concerned individuals do not know how strong an advocate one has to be. of course the loved ones say everything is wonderful.


  6. October 5, 2016 at 12:58 am

    SDM sounds positively horrible. Having been part of the IEP team and the ISP team, my experience has been that the professionals have additional agendas and may not have my child’s best interests at heart AND they really do not want to include parents on the team. My son is very impaired and cannot make a decision such as… should I or should I not have a colonoscopy. That is why he needs guardianship. I am not sure if I completely understand what is happening with this guardianship/SDM effort. I spent over $7k in lawyers fees to get the guardianship, so I don’t believe that it could be taken away so easily.

    My son leads a very nice life. He gets to make a lot of choices, but as his guardian I would not allow him to make a choice that could possibly lead to sickness, injury, or death.

    The Center for Public Representation has done some good things. They are responsible for Rosie D. lawsuit which resulted in the availability of a broad range of services for children with mental health issues. I am wondering if these folks at the CPR have ever been fully briefed on the needs of the most severely disabled in the community.

    In general there seems to be a broad effort to ignore the needs most severely impaired in the state. This SDM is one thing, the DDS move towards shared living is another. Shared living is not appropriate for the most severely disabled population. The restructuring of MassHeath without considering the needs of the most severely disabled population is yet another problem.


  7. Rhys Burchill
    October 12, 2016 at 12:01 am

    Perhaps it’s time to question the membership of the President’s Committee on Disability(current and future) who influence national public policy that trickles down to states.


    • Maureen Shea
      October 11, 2018 at 8:07 pm

      This was started before our current President.
      This is all to cut back on good care, monitoring is important and this population needs parents involved most definetly. This would not allow the guardian parents any day in medical!!! Most of staff cannot read or write and not a lot of English
      This is WRONG.


  8. September 3, 2017 at 10:41 pm

    There definitely seems to be a shift toward ignoring the needs of the most severely impaired. What I am unclear on is how to go about advocating for a greater focus on the severe population.


  9. Maureen Shea
    October 11, 2018 at 7:58 pm

    From my standpoint Residential Facilities would just love getting rid of Parents as Guardians as thrn they would decide if the client really needed to go to the doctor, even with a less than qualified staff.
    This should never happen to this vulnerable population, as no team and no staff care like a family does. This is the most rediculous statement ever.
    It’s all to make the residential staff slack off and the CEO not take responsibility for these important medical decisions. Pass Stan MacDonalds Bill


    • Gail. Giles(
      October 11, 2018 at 9:37 pm

      This ides is definitely not to the benifit of the client. In this complicated system advocates8 are a must, including guardians who have the best intetest for the client. So often the yearly planning meeting for a client has no one to assist them thru the process
      Resulting in a ten minute meeting that concludes alll is well.
      Group homes should have independent ombudsmsn.


  10. Maureen Shea
    October 11, 2018 at 8:02 pm

    Parents are the best guardians for their disabled children. Pass Stans bill as NO one cares for their loved ones more than the parent. To say otherwise
    Is just insanity if a residential home is in charge or some so called Team who know nothing s out the client. It’s inhuman to even think a stranger reading a paper could care more than the parent .


  11. Rita Seay
    January 17, 2019 at 9:40 am

    I’ve taken care of a DD lady in my home for sixteen years. In all those years she’s never had a guardian. She has thrived in my home and outlived her life expectancy by 20 years. Her doctor has told me she is doing so well because of the great care she has received through the years. She was recently appointed a guardian. I had been asked by her mother to be her guardian, but the company I am contracted by, told me I couldn’t, as it would be a conflict of interest. So she was appointed a case worker for abused elderly to be her guardian. The guardian knew my history with this lady and how she had no medical issues in the sixteen years she had been with me. She didn’t like me, because of the amount of knowledge I had on this lady, and I was refusing to do things that where against my lady’s protocols. She chose to take her away from me and move her in with a lady that knew nothing about her. I was devistated by this very poor decision, but was told I had no say in it, she was the guardian, and could do whatever she wanted. She was taken from me August 2018. I was just informed yesterday, that she had died. She didn’t die, she was killed! This guardian told me she didn’t believe in withholding anything from my lady, knowing she was on a restricted soft food diet, with a choking protocol in place. I’m am devastated, and don’t know what to do. The second week she had her in her care she was rushed to hospital because this guardian was giving her hard cookies to eat, not moistened, as was stated in her protocol. It was stuck in her throat, and she was rushed to the E.R. This was a nightmare for me, and now five months later she is dead. Please if your family member needs a guardian, step up to the plate. Don’t let someone that’s in it just for the money, be chosen to be a guardian, or you may end up with the same results… so heartbreaking!!


    • Maureen Shea
      January 17, 2019 at 10:30 am

      Totally working toward chipping away from the most responsible caretakers of their loved ones, Family. This sets us all backwards, and is unexceptable. It is unimaginable that parents and families rights could be destroyed and the simple reason is $$$. No more meetings with DDS or Residential to help advocate when there is known decrease safety in these homes!!! Unexceptable! Dumbing down the safety of these individuals leaving them with decrease basic human rights eventually . This from the very people who are mandated reporters !! Not ok


    • January 17, 2019 at 10:39 am

      Rita, can you contact me about this case at davidskassel@gmail.com? Thanks.


  12. Gail A Giles
    January 17, 2019 at 10:43 am

    even the best of group homes and the brightest of the residents seem to think only the manager can make her a doctors appointment but she has to wait because he is on vacation (bad cough). And the true delight of a resident thrilled he can get a soda or pick out his lunch once a week. And yes, i have seen it many a time, if there is no one personally involved with a resident at their yearly service meeting, the meeting lasts about 10 minutes. even major concerns are not addressed.
    it is so so sad.


  13. Maureen Shea
    January 17, 2019 at 11:12 am

    “Team of Network” most frightening of all


  14. Maureen Shea
    January 17, 2019 at 11:18 am

    Eliminating guardianship is a disservice to persons with disabilities as many are under their parents or families who are the ONLY ones who have been with them from the beginning and live them the most .
    Higher functioning maybe but the majority are not higher functioning and everyone knows this. This is a way to give less care, WRONG


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