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MCAR
NEWSLETTER June 2006 page 1 Happy
Summer to All! This edition of the MCAR newsletter brings you: • A report of the 2006 General Assembly session •
A report of the June 2006 VOR national annual meeting • Critical respite care information – 2007 plans • Guardianship
• Rosewood DVD GUARDIANSHIP According to the Governor’s Access Steering Committee Report of 2001 , “Ultimately,
the individual’s choice or team recommendation for community placement would supercede family’s preference, unless
a family member is guardian for the individual.“ So, it is recommended that you obtain legal guardianship for your loved
one with severe/profound mental retardation, if you have not already done so. More guardianship resources inside… ROSEWOOD
DVD Early in 2006 the Rosewood Center Auxiliary, a family and friends group, authorized the making of a DVD showing highlights
of services available to individuals at Rosewood and including staff and family interviews explaining what makes Rosewood
today such a special place and what it can offer to individuals needing and desiring services there. It was distributed to
all the Maryland legislators and many other state and local officials. Contact Harry Yost at 410-768-5656 for more information!
Thanks, Rosewood Auxiliary! CHECK THE LAST NEWSLETTER PAGE for newsletter name/address changes and opportunities to help!
CURRENT CENSUS: Brandenburg Center – 20 Holly Center – 100 Potomac Center – 46 Rosewood Center – 202
IMPORTANT FUNDS NEEDED If this MCAR newsletter and past issues are helpful to you, please consider making a donation to MCAR
to fund our efforts across the state for CHOICE, ACCOUNTABILITY and QUALITY for services for people with MR/DD. We are a totally
volunteer group and receive our support through donations. Please help! We need your financial support! Together we can continue
to do much. Thank You! Send donations payable to “MCAR” to P. O. Box 2407 Ellicott City, MD 21041 (MCAR is incorporated
as a nonprofit organization but does not yet have tax-exempt status.) VOR MEETS IN D.C. Marylanders from across the state
gathered with advocates from across the country at the annual VOR (Voice of the Retarded) meeting in Washington, D.C. June
9-12, 2006. Much positive networking took place and sharing of grassroots advocacy tips always helps the local efforts. We
were also pleased to share our perspective as family members, friends or self-advocates with the Congressional offices and
concentrated on the critical lifeline Medicaid brings to individuals with developmental disabilities. VOR has members who
advocate for appropriate quality services and choice no matter the residential setting. Mark your calendar and plan to come
next June! Find VOR anytime on the web at www.vor.net for excellent information. Tom Frain, one featured speaker at the conference,
is a lawyer and advocate for his brother with developmental disabilities who lives in a group residence in Massachusetts.
He emphasized getting involved in the care plan of your friend or loved one and gave encouragement to persevere. He also is
a proponent of guardianship in many cases for a person with severe mental retardation. Tom is active in COFAR, a statewide
organization of advocates for individuals with MR/DD in Massachusetts. Check out their website www.cofar-mass.org. page2 MD
2006 LEGISLATIVE SUMMARY June 2006 Dear Friends, Thanks to all of you who answered our email alerts and contacted legislators
concerning the DDA Budget this year. Your calls, emails and faxes made a difference! They also served to build key relationships
with your legislators! Our groups of MCAR, VOR, Community Resource Center Coalition and several residential center family
organizations were successful in voicing our concerns for choice and for keeping all good quality options open to Marylanders
including the 4 State Residential Centers. We are unique in that perspective among advocates in Annapolis. Other speakers
in Annapolis, including the MD Disability Law Center and others, pushed for elimination of all institutional care in Maryland.
We spoke in favor of the Direct Wage Initiative to increase the pay scale for community home direct care workers. It is sorely
needed. We spoke in favor of funding the Transitioning Youth endeavor which assists in moving individuals from services in
high school or at age 22 to the adult arena of work and further life choices. We spoke in favor of the budget for the 4 residential
centers and against funding quotas of people to be discharged from the residential centers. We feel people are free to leave
the residential centers and encouraged to do so if they feel a move to a different level of service meets their needs best.
There is absolutely no need of arbitrary quotas that are not person-centered. We opposed the $400,000 in the budget to
fund the inclusion of “independent” resource coordinators at individual team meetings at all 4 residential centers
. We believe it is state money poorly spent as communication about options in other community settings is currently offered.
Individuals and families need and deserve CHOICE! However, the $400,000 remained in the adopted FY2007 budget. The DDA
budget was approved. Here’s a recap of the SRC portion. 2006 Budget 2007 Budget Rosewood - $39.22 million Rosewood
- $41.8 million Holly Center - $17.078 million Holly Center – $18.6 million Potomac – $9.49 million
Potomac - $9.6 million Brandenburg - $4.23 million Brandenburg - $4.5 million Approx. Total - $70.018 million
Approx. Total - $74.5 million This is an election year! It is SO important to stay in touch with your legislators! There’s
an old saying “The squeaky wheel gets the grease!” We need to be that squeaky wheel to let legislators know that
we, along with many other taxpayers, support the widest array of options for Marylanders with developmental disabilities including
the 4 residential centers! Let them know how important CHOICE is to you as a voting citizen and that you also act on behalf
of a loved one who is not able to vote and voice his/her choice at the polls, but is a citizen nonetheless! Call your local
library or check online at: http://mdelect.net/electedofficials/ to verify your legislators’ names and contact information.
Communicate with Governor Ehrlich also (and other candidates for governor). Even though he has had individuals with disabilities
high on his agenda and has created a cabinet-level Office of Disabilities, this office represents a community-only philosophy
and Governor Ehrlich needs to know that many constituents in Maryland DO want the 4 residential centers to remain high-quality
and a part of the spectrum of services! We must continue to maintain professional representation in Annapolis for the foreseeable
future. We will be working hard and be organized in regard to our 2004 respite care bill (2004 – HB475). See the accompanying
newsletter page highlighting the respite care bill. This bill authorizes the use of Brandenburg, Holly, Potomac and Rosewood
Centers for desperately needed respite care for 3 years with a legislative review next year. 2007 promises to be a much busier
session for all of us as we look to make that 2004 legislation permanent! We count on your involvement and support! Mark Engberg,
MD CRC Coalition mengberg@comcast.net page 3 Let’s Help Keep Respite Care Options Available in Maryland! In 2004 the
Maryland Legislature passed a bill (HB 475) enabling State residential centers to provide respite care for eligible individuals
with developmental disabilities who live at home. The bill states that “each State residential center shall reserve
at least 2 percent, but not more than 4 percent, of its total beds for respite care” [HB 475, section 1 (b)(1)] . As
a result, many families can now choose from a wider variety of respite care providers: group homes, in-home care, or State
residential centers (SRCs). Know your rights. Spread the word! However, HB 475 was only approved for a three year period (2004-2007)
and in January 2007 the Department of Health and Mental Hygiene will make a report to the Maryland Legislature on the effectiveness
of HB 475, after which the Legislature will determine whether or not to make it permanent legislation. We want HB 475 to become
permanent legislation because it significantly expands options for needed respite care in Maryland. Without it, choices would
be limited and respite care services as a whole would decrease. Together, we can make our voices heard in Annapolis on the
benefits of this important respite care bill! Soon we will be asking for your input as we hope to gather stories from you
of respite care services you have experienced as well as services you hope to have available. Look for more information in
our next newsletter in September. Your experiences and feedback are important!!! RESPITE CARE: Care provided on a short-term,
temporary basis to an individual with developmental disabilities in order to provide relief to a primary caregiver. Respite
care may not exceed 28 consecutive days or 45 days total within a fiscal year. Link to 2004 Respite Care bill HB 475: http://mlis.state.md.us/2004rs/billfile/hb0475.htm
page 4 THE QUESTION OF GUARDIANSHIP It is HIGHLY RECOMMENDED that you obtain legal guardianship for your loved one who has
severe mental retardation if you have not already done so. Legal guardianship must be obtained through the court system. Although
you are a parent, brother, sister or family member, you do not have LEGAL GUARDIANSHIP unless you have formally obtained it
through a lawyer and the courts. We believe that it is much better for a family member who knows his/her loved one to have
guardianship than for a guardianship agency or other appointee to serve as guardian! **If you need more information,
contact a knowledgeable lawyer.** Mary Reese (301-460-8833, cell 240-602-4224), Margie Engberg (410-749-4260) or Glenn
Brown (301-422-3369) from MCAR can offer further input on cost-cutting measures to obtain guardianship and guardianship’s
value. Please also see resources below to help you. 1) Excerpts from “Future Planning: Guardianship and People with
Mental Retardation” by Rick Berkobien The Arc of the United States #101-57 Oct. 1997 http://www.thearc.org/faqs/guard.html
6/21/06 Guardianship is the legal power to care for another person and manage his or her affairs. Each state has its own specific
laws on guardianship, Guardianship is a legal, not medical determination. When people become adults -- including people with
mental retardation -- they get all the legal rights and responsibilities of any adult. Only the courts have the authority
to remove these rights. A court makes this decision based on the person's abilities to handle personal decisions, money, property
and similar matters. The incapacity (or legal inability) to handle these matters is grounds for a guardianship, not mental
retardation. Guardianship of the person or property Guardian of the person or property - This type of guardianship is sometimes
characterized as "guardian of the person" or "guardian of the estate." In the guardian of the person,
the individual needs a guardian to decide personal issues. These decisions may include where to live, consent for medical
treatment and signing for services. A guardian of the estate, called a conservator in most states, usually has power over
the ward's money or property, not the individual's personal matters. 2) excerpts from VOR website – section on guardianship
http://www.vor.net/guardianship.htm 6/21/06 ________________________________________________________________ Some people with
MR/DD need help making some or all of their life’s decisions, including those that arise daily. A court will decide
whether full or limited guardianship (also called “conservatorship” in some states) is needed and will appoint
the guardian. In most cases, the guardian will be a family member. Some state statutes even indicate a preference for family
members as guardians because family members typically have a lifelong connection with the individual with MR/DD and can best
ascertain the individual’s wishes and best interests. State law establishes the specific duties of the guardian or conservator.
It is important to note that your status as a parent or sibling or other relation is not the same as being a legally-appointed
guardian. Once the child with MR/DD reaches adulthood, parents who want to retain decision-making power must go to the courts
to seek guardianship. During your lifetime you can enlist co-guardians…, to allow seamless transfer of guardianship
authority upon your passing….. Once an individual reaches adulthood, the individual with MR/DD’s eligibility
for public benefits relates solely to his/her personal income and assets. A guardian will never be held liable for the cost
of that individual’s care, no matter the personal wealth of the guardian.
MCAR NEWSLETTER
October,
2005
Greetings!
Our May newsletter brought you some information on the 2005 legislative session in Maryland as well
as some acronyms used frequently in discussing issues relating to services to individuals with MR/DD. We hope it was helpful
to you. (For the May 2005 newsletter, see "Archived Newsletters" link above or at the bottom of this webpage.)
New For 2005: Resource Coordinators added to Individual Annual Team Meetings.
Read more on pgs. 3 &
4.
During the summer MCAR as well as the MD Community Resource Center Coalition (MD CRC) have been active in voicing
support for individuals and their families choosing their services where they feel their needs are best served – including
the 4 residential centers. On separate sheets in this mailing, please read carefully the document entitled “Maryland’s
Resource Coordinators and the Most Appropriate Setting: It Can Be A Residential Center (SRC)” and accompanying texts.
We believe that if families observe and know that the individual is best served by the services, activities, and medical care
at the centers and it is their choice to live there, there is very helpful information in this document to aid you to be firm
in that decision. The 4 centers are improving continuously in providing opportunities and carrying through on the resolve
to make the centers often the most integrated setting for that individual. (We hope to feature more on “most integrated
setting” in our next newsletter.) Please contact us for more information.
CHECK THE LAST NEWSLETTER
PAGE
FOR A KEY VOLUNTEER
OPPORTUNITY TO HELP!!!!!!
CURRENT CENSUS:
Brandenburg Center – 21
Holly
Center – 105
Potomac Center – 47 and Rosewood Center – 187.
Important Funds Needed:
Also in this newsletter, you will find an important funding letter and envelope from the Community Resource Center Coalition
signed by Mary Lou Chandler and Mark Engberg. This appeal largely funds critical assistance from excellent lobbyists who help
us in getting across the message to the legislators that what is needed is CHOICE, QUALITY and ACCOUNTABILITY in services
for people with MR/DD in Maryland and this needs to be through a variety of residential settings INCLUDING THE 4 STATE RESIDENTIAL
CENTERS. (That is where we differ from many advocates!) They also help put forth the message of the future of the centers
in Maryland to continue being residential as well as becoming Community Resource Centers for all people with MR/DD, regardless
of where they live, inviting them to receive hard-to-find medical, dental and therapy services on campus. Community resource
centers offer training for professional staff so they might go into the community setting with more skills and expertise in
serving individuals with MR/DD. Other states have implemented this CRC concept with good results.
We have been
as successful as we have in these past years because of the expertise of this legislative assistance as well as your willingness
to write, testify and get involved, and we will need that involvement even more in these upcoming months. Watch for email
alerts.
Please read the funding letter carefully and respond as generously as you can. Checks from all across the state
are to be made out to Rosewood Auxiliary – Coalition Fund. Many thanks to the Auxiliary at Rosewood for processing the
gifts through that account. The dollars go to the statewide effort for all 4 centers.) Thank you!
Questions: Contact
webmaster@mcar.info or call:
Glenn Brown 301-422-3369 MD/D.C.
Sharon Hayes 410-546-1415 Salisbury
Linda Scherer
410-744-7421 Baltimore
P. O. Box 2407 -- Ellicott City, Maryland 21041
Website: http://mcar.info Email: webmaster@mcar.info SAMPLE LETTER SAMPLE:
Subject: Support HB 965 and Oppose HB 970
Dear Delegate Hammen and Members of the HGO Committee -- Dear Delegate Hammen and Members of the HGO Committee, I am writing to ask you to please
SUPPORT HB 965 extending the respite care bill so families can continue to receive good respite services at the State Residential
Centers. There is so little respite care in the community and it is critical for many people who are struggling to take care
of their loved ones but need a break. It is critical for caregivers who need surgery themselves or have circumstances keeping
them from caring for their loved one for a period of time. I am also writing to you to ask that
you OPPOSE the Rosewood Transition plan HB 970. Since Rosewood needs help, particularly with care for forensic clients, give
them the training and funding they need. Fix it – don’t dump it! Rosewood and the other 3 State Residential Centers
(SRCs) offer a tremendous service for many people I know and care about. Maryland needs the range of services to offer its
residents.Community services for each person in Maryland is not an option I support! One size does not fit all! SRCs are an
asset Maryland has and the care and services they provide are of real value-critical value! They are essential as an option
for individuals with severe and profound mental retardation/developmental disabilities who often have issues with behavioral
challenges and fragile medical conditions. Thank you.
Maryland Resource Coordinators
and the Most Appropriate Residential Setting:
It can
be a State Residential Center (SRC)
In 2005 MD legislators passed a law (H.B. 794) that requires an “independent”
resource coordinator now be a part of the annual (or more frequently held) team meeting which discusses services, accomplishments,
goals, and choices for an individual living at Rosewood, Brandenburg, Holly or Potomac Center.
According to the new
law, this coordinator's job is to make individuals and families/guardians aware of options he/she sees as more integrated
services and to identify barriers to those community services. This law states the options need to be "appropriate to
meet the individual's needs." The job of this coordinator is not to force community placement. The following points of
reference should be taken into consideration when evaluating, on a case by case basis, what is most appropriate and what choice
can best serve an individual with severe/profound mental retardation.
The Freedom to Choose where they wish to
live is a right that must be granted to an individual with MR/DD, like any other U.S. citizen (see, 42 U.S.C. §1396n(c)(2)(C),
42 C.F.R. §441.302(d); and 42 C.F.R. §441.303). A family member/guardian is positioned best to make decisions on
behalf of an individual with severe/profound mental retardation.
The Most Integrated Setting provisions of Maryland
state (MD Annotated CODE 7-502) and federal (28 C.F.R. 35:130 (d),(e)(1)) law are always accompanied by a qualification such
as, "consistent with the individual's welfare and safety.” With this qualification, the level of interaction with
non-disabled individuals is also considered. Maryland’s SRCs sponsor and encourage a wide variety of activities such
as: vacations, dances, festivals and picnics, fashion shows and trips to area restaurants, movies and attractions as well
as attendance at religious services of their choice. There is also interaction with non-disabled friends, volunteers, families,
advocates, neighbors and the general public both at home and off-campus.
The Olmstead Decision in 1999 affirmed
the right of an individual with a disability to choose a community or SRC residence. Contrary to what some people contend,
Olmstead does not mandate that individuals with MR/DD be placed in a group home rather than an SRC. In fact, the Supreme Court
justices stated specifically, "Nor is there any federal requirement that community-based treatment be imposed on patients
who do not desire it." Olmstead v. L.C., 119 S. Ct. 2176, 2187 (1999), emphasis added).
State reports, investigative
media series and peer-reviewed research show that some individuals with MR/DD deteriorate, physically and emotionally, when
transitioned from an SRC into a group home environment (http://www.vor.net/abuse_neglect.htm). These individuals cannot (morally
or legally) be forced to live in an environment that compromises their welfare and safety and which is detrimental to their
development as human beings.
Quality of Care is routinely better in SRCs than in group homes because: (1) In Maryland,
direct care personnel in an SRC must have CNA/GNA certification as a minimum (or obtain one within 60 days after hire), while
no such requirement exists for group home workers. (2) Pay rate is better in an SRC, thus attracting more qualified persons
and lessening their need to work additional jobs. This translates to better job satisfaction and less fatigue for the worker.
(http://www.dhmh.state.md.us/csrrc/white_papers/2002_B2.htm). (3) The turnover rate of direct care staff in SRCs is significantly
less than for workers in group homes, thus providing a more stable, long-term personal relationship with the individuals being
cared for which is of great benefit. (http://www.dhmh.state.md.us/csrrc/white_papers/2002_B2.htm).
The Community
Imperative’s conclusion that only settings in the community optimally foster the development of individuals with mental
retardation is demonstrably false, especially for individuals with profound/severe mental retardation, some of whom require
intense medical attention ( http://www.vor.net/abuse_neglect.htm and http://www.vor.net/VOROpposesCommunityImperative.html).
For these individuals, the advantages of an SRC environment are required.
Maryland Coalition of Advocates for the
Retarded (MCAR) is an affiliate member of VOR.
Maryland Resource Coordinators And the Most Appropriate Residential
Setting: It can be a State Residential Center (SRC)
Helpful Resources
Here are some selected texts and definitions
upholding choice of a state residential center as a residence/service option.
42 C.F.R. 441.302 (d) (Code of Federal
Regulations)
(d) Alternatives--Assurance that when a recipient is determined to
be likely to require the
level of care provided in a hospital, NF, or
ICF/MR, the recipient or his or her legal representative will be--
(1)
Informed of any feasible alternatives available under the
waiver; and
(2) Given the choice of either institutional
or home and community-
based services.
28 C.F.R. 35:130 (d),(e)(1)
(d) A public entity shall administer
services, programs, and
activities in the most integrated setting appropriate to the needs of
qualified individuals
with disabilities.
(e)(1) Nothing in this part shall be construed to require an
individual with a disability to
accept an accommodation, aid, service,
opportunity, or benefit provided under the ADA or this part which such
individual
chooses not to accept.
42 USC (United States Code) 1396n ( C )
(C ) such individuals who are determined to be likely
to require the level of care provided in a hospital, nursing facility, or intermediate care facility for the mentally retarded
are informed of the feasible alternatives, if available under the waiver, at the choice of such individuals, to the provision
of inpatient hospital services, or services in an intermediate care facility for the mentally retarded.
MOST
INTEGRATED SETTING:
“Most integrated setting” is defined as a setting that enables an individual to interact
with persons without disabilities to the fullest extent possible. This is usually understood to exclude paid staff persons.
The Wall Street Journal, September 15, 2005
Safe Place: Disabled People Find Group Homes Can Be Broken too –
Patients Gain Independence, But Oversight is Spotty; Challenges of Monitoring – excerpt from the article
Over the
past three decades, there has been a concerted effort to move people with developmental disabilities out of large institutions,
which had been long criticized for being overcrowded and isolated. A widely lauded effort to move people into smaller group
homes has succeeded in bringing the developmentally disabled into communities where they can learn new skills, get jobs or
attend special schools. But this progress has come at a price. It has strained the systems that support people living in the
smaller settings and created big gaps in oversight. Twenty-five years ago, people with developmental disabilities lived in
about 16,000 publicly funded homes. Today, they are scattered in about 140,000. "The systems of quality monitoring have
really been taxed beyond what they can manage," says Charlie Lakin, who heads a University of Minnesota program that
tracks services to the developmentally disabled. "By and large, a lot of it is pretty loosely organized and pretty loosely
monitored." Only a half-dozen states require that residential programs serving the developmentally disabled be accredited
by an independent third- party organization. Developmental disabilities, which affect about 4.6 million people in the U.S.,
include a range of mental and physical impairments, such as cerebral palsy, autism and mental retardation. Babcock (South
Carolina provider) offers a stark look at the flawed monitoring of group homes, which sometimes leaves family members and
other advocates feeling they need to police the care themselves. The U.S. Department of Health and Human Services -- which
pays about half of the $27 billion spent annually on community services for the developmentally disabled -- is ultimately
responsible for their protection. But the federal agency assigns the creation and enforcing of rules over such homes to each
state. As a result, laws and monitoring vary by state. States aren't required to report all incidents of abuse or neglect
to the federal agency. The federal government typically only gets involved if families, advocates or employees of homes provide
credible concern about the thoroughness of a state investigation. HHS, which oversees the Centers for Medicare and Medicaid
Services, is drafting new procedures following a 2003 report from the General Accounting Office, saying states should be required
to report more information about how they protect people with developmental disabilities. Thousands of nonprofit group homes
offer well-supervised programs for the developmentally disabled. But problems exist to some degree in nearly every community,
says Curtis Decker, executive director of the National Disability Rights Network, a nonprofit group. Investigators may overlook
flaws, he says, because of a lack of other housing options. "They don't know what to do with these folks if they closed
a place down." The number of abuse and neglect cases among the developmentally disabled isn't collected nationwide. Many
states don't keep central databases on employees involved in such cases, allowing workers to move from one agency to another.
"You put people in tough jobs, who are underpaid, not well-trained or supervised, and the potential for abuse is big,"
says Mr. Decker. "It's endemic to the country."
Maryland - The Baltimore Sun, April 10-17, 2005 and continuing
with updates through September 21, 2005 as of this mailing Reported by Jonathan Rockoff.
_______________________________________________________________
Failure to protect – Maryland’s troubled group homes___________
This is a series featuring foster
care/homes for children. There is concern that a parallel exists with group homes for people with MR/DD.
In an investigation
of state oversight of group homes going back a decade, The Sun found that:
• Mistreatment of children has gone unpunished.
• People with criminal convictions can -- and do -- work at group homes
.• Taxpayers' money is often wasted
on poor care, denying youths a range of services.
• Maryland subsidizes high salaries and perks.
The Sun examined
the regulation of care, spending and staffing at 25 companies that ran 120 homes for children. Reporters studied 15,000 pages
of inspection reports, case files and other records obtained under the state's Public Information Act and conducted more than
150 interviews.
Internet: : www.baltimoresun.com/news/local/bal-grouphomes
VOR OPPOSITION TO THE COMMUNITY IMPERATIVE
In January 2004, the VOR (Voice of the Retarded) voted in support of two principles relating to choice in residential
settings:
“We, as a society, should provide necessary services and supports that an individual with a disability
needs in order to have the best quality of life, as defined by that individual, or where appropriate, his/her family/guardian/conservator.”
“In fulfillment of fundamental human rights and in securing optimum developmental opportunities, all people,
regardless of the severity of their disabilities, should be able to live where they choose.”
The conclusion
of the Community Imperative -- that no one requires institutional care -- does not logically follow from its stated principles.
VOR embraces the principle that all people, regardless of disability, have fundamental moral and constitutional rights. All
people are inherently valuable, can grow and develop. We submit, however, that choice in a full array of residential settings
best fosters individual development, happiness and overall good outcomes. The Community Imperative is endorsed by and forms
the basis for the community or nothing position held by some national, state and local organizations. It attempts to put forth
arguments supporting its premise that no one needs (nor presumably ever will want) facility-based supports. The Community
Imperative is an insult to America’s long-standing efforts to assist those who cannot provide for themselves.
VOR’s Mission and activities are aimed at ensuring individuals with mental retardation and their families benefit
from the opportunity to choose quality residential supports that best accommodate individual need.
__________________________________________________________
May 2005
MCAR
P.O. Box 2407
Ellicott City, MD 21041
What are all these letters…initials…acronyms…code
words…?
(Part 2 - continued from the January 2005 MCAR newsletter)
Two Maryland Groups: MCAR and MD
CRC Coalition
MCAR - Maryland Coalition of Advocates for the Retarded - the group sending you this newsletter!
We are a statewide coordinating coalition which seeks to advocate for individuals with MR/DD and work for accountability,
choice and quality in a wide range of services for them and their families. We advocate for residences including independent
living, family homes, community group homes and the 4 residential centers (ICFs/MR - Intermediate Care Facilities for persons
with Mental Retardation)) in Maryland - Holly (Salisbury), Potomac (Hagerstown), Brandenburg (Cumberland) and Rosewood (Owings
Mills).
Some people active with MCAR efforts have family members who reside in the community and some have family
members who reside at residential centers. We differ from the ARC and other organizations who have an adamant “close
all institutions” attitude. We want to see a true range of options or continuum of care in Maryland so that individuals
can live in the setting that best suits them as individuals at any particular time in their life. We see ICFs/MR as excellent
choices for some people. We need to work for great quality in community homes as well as great quality in ICF/MR settings
and we want to see that CHOICE upheld. People can leave the institutional settings any time they wish. They also need to be
free to live in that setting if it meets their needs.
To learn more abot the mission and history of MCAR
as well as legislative notes and helps, check our new website:
http://mcar.info
MD CRC Coalition -
Maryland Community Resource Center Coalition - another statewide coalition of people with a strong commitment to retaining
Brandenburg, Holly, Potomac and Rosewood Centers to serve the widest possible group of people with MR/DD and their families
by “reinventing” the 4 state residential centers to be Community Resource Centers (CRCs) that would still include
residence options for people who are served well there but also to add a service component and an academic component to what
is already in place and offer that to the larger MR/DD population. Community Resource Centers in other states offer dental
care and medical service to patients with MR/DD, (quality services which can be very difficult to obtain in some areas), training
opportunities for staff in a geographic location, adaptive recreation programs/facilities, and training opportunities for
medical/dental/other students who need to learn more about giving quality service to persons with MR/DD and accompanying physical
disorders and behaviors. We believe this is a needed plan for Maryland. Thank you to all who gave donations to the MD CRC
Coalition for critical legislative assistance. Be sure to read Mark Engberg’s attached MD CRCoalition/VOR report on
important MD legislative news from the Annapolis session ending in mid-April. Many thanks to so many of you who emailed, faxed,
testified and called this year to let your elected officials know the
quality services needed and your wishes for choice
for the people you care about! Your involvement brought results!
MiCASSA
The Medicaid Community-Based
Attendant Services and Supports Act (MiCASSA)S. 401 and H.R. 910 ---
This is a mandatory Medicaid funding legislation
that has been sought for a number of years. So far it has not passed the Congress. It would be helpful to people living in
the community who need the guarantee of a personal care assistant for quality daily life. This would be mandatory Medicaid
legislation if it were to be passed. The intent is good, but MCAR is concerned over net loss in needed Medicaid funding and
does not support MiCASSA legislation in the current form.
As Medicaid funding is now, the state residential centers
(ICFs//MR on Medicaid) as well as the community homes (on Medicaid “waivers”) are funded through the optional
Medicaid funding package. States have been faithful in
funding dollars under the optional designation, but if a mandatory
Medicaid funding were made law, that would take precedence over the ICF/MR and group home funding. And funding would drop
or freeze at pre-MiCASSA levels for them. A more equitable solution is to consider how to make more available personal attendant
care services already available through the optional Medicaid Home and Community-Based waiver program.
See the
VOR website for more information on MiCASSA.
http://www.vor.net/MiCASSAPosition.htm
VOR - Voice
of the Retarded
VOR is the only national organization that advocates for a full range of quality residential options
and services for individuals with MR/DD and supports and VOR opposes efforts that eliminate options for persons with MR/DD
and their families/guardians. MCAR is pleased to be an affiliate member of VOR. Be an individual member and support
VOR as it acts to help you! See the attached information sheet on the VOR annual meeting in Washington , DC on June 11, 2005.
Please come! You will be strengthened and encouraged by good information and by other advocates who believe in choice!
Below is an excerpt from VOR’s website: www.vor.net
Check out the website for a wide variety of excellent
information links.
The Mission
Our Mission is to unite people in advocacy, to educate and assist families,
organizations, public official, and individuals concerned with the quality of life and choice for persons with mental retardation
within residential
options. This includes home, community residences, congregate and institutional settings. The Activities
VOR is often the only organization that speaks up for people who cannot speak for themselves in the courts, in Congress,
the state legislatures, and in all policy making offices. Through our education, legal activities, and advocacy, we inform
and empower our members.
The Vision
VOR is helping to create a world where all persons with mental retardation
benefit from a full range of quality residential choices including home, community residences, congregate and institutional
settings, and families are
secure in the fact that their individual choices will be respected. The Objectives Maintaining
a full array of quality residential settings and support services to meet the needs of all people who are mentally retarded
AND countering the current attitude that all persons with mental retardation can be mainstreamed. The Values We value the
right to choose. We value quality services for all persons with mental retardation. We value family participation in all decisions.
These values are not compromised based on a cost/benefit analysis. The Challenge VOR is the only nationally organized Voice
effectively speaking out for choice. Other national groups are working to eliminate large residential
settings for people
with mental retardation. VOR will not allow that to happen!
The Means
VOR has thousands of members across
the country. VOR's activity is funded primarily through membership contributions. That means our members trust VOR to serve
as a steward for their visions, mission, values, and goals. VOR is a 501(c)(3) nonprofit organization; donations are tax deductible.
VOR * 5005 Newport Drive * Suite 108 * Rolling Meadows, Illinois * 60008 847-253-6020 ph. * 847-253-6054
fax * vor@compuserve.com
Olmstead - a 1999 U.S. Supreme Court decision that has made impact on all states.
Olmstead study groups exist to see how Olmstead affects policy. We need to be informed on the content of Olmstead to be able
to make sure good
choice is given to the people we care about who have MR/DD.
For example:
In the Olmstead
Decision, while emphasizing that some people require an institutional setting, the Court ordered states to provide community-based
services for people with mental disabilities when all 3 criteria can be met:
1) the state's treatment professionals
determine that a community placement is appropriate,
2) the person affected does not oppose a community placement, and
3) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs
of others with mental disabilities.
Another Olmstead Decision quote:
"We emphasize that nothing in the
ADA (Americans with Disabilities Act) or its implementing regulations condones termination of institutional settings for
persons unable to handle or benefit from community settings . . . Nor is there any federal requirement that community-based
treatment be imposed on patients who do not desire it." 119 S.Ct. 2176, 2187 (1999).
In addition, VOR (Voice
of the Retarded) has a helpful Olmstead Resource link on its website : http://www.vor.net/olmstead_resources.htm.
See Olmstead text website:
http://supct.law.cornell.edu/supct/html/98-536.ZO.html (particularly section III , subsection
A)
There are some advocacy groups arguing that Olmstead mandates the closure of all "institutions." This
is not accurate, These people do not acknowledge the Olmstead words emphasizing that, for some people, a community placement
is not appropriate, and they would like to disregard the right of an individual to refuse a community placement. They also
overlook the possibility that, because of the "community's" limited direct-care capacity , a significant number
of people being moved from "institutions" to the "community" might deprive others who are on the waiting
list from receiving desperately needed services. Maryland currently has a waiting list of 14,000 people in line for some full
or partial services immediately or in the near future. 2400
individuals are in a crisis resolution or crisis prevention
category of need.
ARC - formerly the Association of Retarded Citizens, now known as ARC. There is a national
ARC as well as state organizations (such as the Arc of Maryland)
and county or regional ARC organizations. The ARC is
in the forefront of services for persons with developmental disabilities and provides some wonderful services. However, the
stated intent of the ARC is to close all
institutions! See their website at : www.thearcmd.org
GOOD IDEA!! - Take a copy of this newsletter and visit each of your legislators. Encourage them to see the need for a continuum
of care options for individuals with MR/DD. The philosophy of CHOICE needs to be paramount.
Stay in touch with them
in this off-season when the Annapolis schedules are not so strenuous.
GOOD IDEA!! - If you are an at-home
caregiver for a person with mental retardation/developmental disabilities and really need a break or need time for a medical
procedure/surgery OR if you know of a person with needs like this, please let them know of the respite care services provided
at the 4 residential centers in MD - Potomac Center, Brandenburg Center, Holly Center and Rosewood Center.
In the 2004
legislative session, we fought hard, and, thanks to your calls and letters, our lobbyists’ work, and the great work
of some dedicated Maryland legislators, a respite care bill was passed and signed into law. It presently has a limited time
frame (until 2007) -- so, please , let people know of this opportunity for help! There have been a number of very satisfied
recipients of this service this past year. But the “word is not out there yet.“ There’s a limit of 28 consecutive
days. See the website:
http://ddamaryland.org Click on state residential centers on the left.
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Census of MD State Residential Centers:
Brandenburg:19
Holly: 106
Potomac:
52
Rosewood : 200
MCAR Newsletter
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*** If you would like to receive legislative session emails which update you and give you
opportunity to contact and inform legislators on issues of Choice, please list your name and email below. Thanks!
Name,
Address and email address:
Questions? Contact;
Glenn Brown at JOGMBrown@aol.com at 301-422-3369
– suburban MD
Sharon Hayes at alohahayes@comcast.net / 410-546-1415 – Salisbury or
Linda Scherer at
lscherer@bcpl.net / 410-744-7421 – Baltimore
MCAR
P. O. Box 2407
Ellicott City, MD 21401
webmaster@mcar.info
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