MiCASSA and Money Follow the Person
http://www.jfanow.org/cgi/getli.pl?1981

From ADAPT

These are the key points of the article linked above. They are the most important changes that must be made for my son to have an appropriate place to live AND to live a real adult life!

 
THREE IMPORTANT GOALS urgently needed

• -- to remove -institutional bias from the Medicaid long term care program.
  
  MiCASSA (S.971, H.R. 2032)
  


• ---Money Follows the Person Act (MFPA, S.1394)
  


• ---move funding from nursing homes into community services so more people can be served in the community without having to wait for legislative changes
  

These are the barriers to having my son served in an appropriate environment, in the least restrictive setting. Without change, my son is forced to live in a nursing home-like facility restricting visitation and paralyzing his social security funds to reimburse that facilty with only $65 a month left for his own personal expenses. The facility limits personal possessions to that which one would be able to have in a hospital room. Banned are his games, puzzles, toys, craft supplies, and computer. He can only leave the place to visit me or his family about two days a month. If he takes a vacation to see his brother in Arizona he would only have a 20 days left per year to visit me on weekends, even though I am only 30 miles away. Say he came to visit me for Thanksgiving and Christmas - this now leaves only 1 day or so a month he can come see me. His morning medications total 11 pills, but the agency will only give medications two times a day. Instead of all his life having taken part of these pills at wake-up and the rest with breakfast to lessen the wallop, he must take the hit all at once because it is convenient for the agency. He must not leave the facility after work from 3:00 to 5:00pm because that is the rule. If he needs to do some shopping or banking, it therefore cannot be on a work day and this limits him when activities are conducted in a business that has a 9 to 5 work day. He can make or receive calls for only 10 minutes at a time because all 15 residents and staff have only one phone. These are just the tip of the prison-like changes he and his family are now forced to accept in order for him to have supported living.

What is the institutional bias? There is only one facility for care in this county that receives government funding. State and county funding will only be given to agencies like the one that he is in. There are no alternative care settings or supports. If he lives in my home or in an apartment in my community, he and I, his guardian/conservator/payee and mother will receive no funding to help pay for his food, shelter, maintenance, and staff to assist. Even though he could live and work in my community, I would not be able to pay for a place for him to live or staff to cover supervision when I am not available. If he lived in my home, I would not be able to work. I would have no relief: no money to pay for someone to come in to cover care if I were ill or out for a night.

What is "Money Following the Person"? I live alone in Iowa, but we'd like to move he and I to another state to live near my oldest son and his family. If we move my son to Arizona from Iowa, he will receive no funding at all for 3 months until he can then apply for Medicaid and Medicare in that state. Then, he would have an evaluation there to see IF Arizona would pay for his care and medications. If accepted, he would then go on a waiting list to receive funding. And, that funding may not pay for many living expenses, medications, and medical treatment that he requires, for that varies from state to state. Arizona notoriously pays little. He could be on a waiting list for years, with no money towards medical treatment and medication until he is accepted.

My son is only 24. He is not retarded. His abilities and interests are that of most young adults. He has a severe seizure disorder and thus needs supervision by staff who can assist in times he would need transport to an ER. He has severe ADD and poor impulse control, with very poor short term memory. He cannot be expected to remember to give himself his meds and to prepare himself daily for work, or go to bed at a reasonable time. He needs assistance in preparing food, doing laundry, housecleaning and the routines of dressing and needs of hygiene. A great deal of his needs for support are not because he is retarded or physically-incapable: his short term memory for following directions is preventing him from being more independent.

What a terrible choice or dilemna: live in a more independent setting or choose the "prison" or "nursing home". At 24, condemned to that type of facility for the rest of his life? Dating? I don't think so in the facility. Recreational and leisure activities? Only as provided by the facility, with the disabled population and no mixing with "normals". Work? Only where the facility has contracts. Income? Controlled by the facility. Ability to save money to make a transition to another place to live? Limited to $65 a month if he saves ALL of his "personal needs allowance". How can this be "America" with life, liberty and the pursuit of happiness? He is condemned by bureaucracy and funding to living where the government will pay. And there are no alternatives allowed by the government, nor alternative settings that can apply to receive essential funding to make other options available to people like him.

Please look into the links supplied: it is really a matter of life for those involved. Adults with dependent care needs, whether eldercare or disability care, are STILL in "institutions" though called agencies and facilities.

- posted by BJ @ 10:47 AM |

 
URGENT Request for Advocacy Action
I have just found this article posted on the website for the National Organization on Disability. Please read the snip below and consider contacting your area legislative representatives. Ironically, the home of this webauthor is within the state represented by Charles Grassley!

ADAPT Activists Converge on Washington to Support MiCASSA and MPFA

http://www.jfanow.org/cgi/getli.pl?1981
Date: March 25, 2004
From March 20 to 25, 2004, 500 ADAPT activists from 30 states converged on Washington in support of the Medicaid Home and Community-Based Services and Supports Act (MiCASSA) and the Money Follows the Person Act (MFPA). Both bills, which are currently stalled in the Senate Finance Committee, would allow older persons and persons with disabilities the option to receive care in their homes, rather than in an institutional setting. In the climax to ADAPT's action, 400 ADAPT members occupied the Senate Finance Committee room and hallway, refusing to leave until Committee Chair Charles Grassley agreed to a hearing on MiCASSA and MFPA. Despite numerous arrests, a hearing was finally agreed upon, and will take place on April 7."

- posted by BJ @ 7:41 PM |

 
Still Can't Believe
...that it is so hard to find sites that are indexed in the major search engines on the issues of dependent care for adults. We can find many sites for eldercare, and it may be that way because there IS government legislation and Older Americans legislation that provides for needs of "older" citizens. But what about the needs of adults who must live in supported living environments that are much younger? In the disability rights field, there are many separate but relatively unorganized groups and websites, primarily dealing with the adults themselves, not their families. This website seeks to find any and all resources that may be helpful to these adults AND their families.

There are guardians, conservators, and payees for adults in dependent care who need help and information to best advocate for their family members and friends. As long as these friends and family members are relatively isolated from others with similar needs, there is little hope for progress in obtaining and providing good living environments for adults with disabilities.

This ED Forum is looking for a few good men and women to join together to first find support resources, and next to advocate together for positive solutions to the dilemna of obtaining appropriate care in the least restrictive settings.

In many areas, there are very few if any agencies that provide dependent living care. In the state of Iowa, for example, many counties have only ONE agency that provides supported living environments, if any at all. In such a climate where the need for placements is increasing, the few agencies there are run their programs with little or no oversite and competition. Without alternatives, monopolies and agency fiefdoms develop and since they are the "only game in town" one must "like it or lump it" as to the routines and rules imposed by such agencies.

Definition of a "good" client:

One who signs away all financial control to the agency and easily adapts to the routines and policies convenient to the agency. Preferably there are no "troublesome" guardians who are family members, and certainly no conservators who ask questions.

Definition of a "bad" client:

A client who is not retarded and wishes to live in the least restrictive setting possible. One who wishes to maintain or develop relationships outside of the agency setting. One who has strong advocates who help them to achieve more independence than the agency is comfortable with. Those who require an agency to "be out of their comfort zone".

Does any of this sound familiar to you? If so, please contact this webmaster at the email address provided in the sidebar. And use the comment feature to add your notes. We will be looking for you! Thanks for visiting today.

- posted by BJ @ 7:09 PM |

 
Reach Out Magazine Blog Links
These are copied from the many links in the Reach Out Magazine website. They are stored within this post at present until they can be added to the Blogrolling links in the column on the sidebar.

Title: CajunHearts Home Page - Life with a disABILITY

Description: Kim is a special friend of Reach Out. Please be sure to check out here home page. She has a lot of great information on ataxia with lots of really useful links. Her site also has lots of great graphics as well.
URL: http://cajunheart.tripod.com

Title: Clarified

Description: Need a laugh? At www.enovel.com you can purchase My Walker and Other Glamorous Accessories by Claire Theriot Mestepey is a collection of short short stories. The stories feature a disabled woman and her unorthodox, politically incorrect views of the world. If money makes the world spin round, humor makes the dizziness enjoyable. This Ally McBeal-like heroine,may warm your insides,you know like heartburn. If you‚re looking for an inspirational tale of how disability triumphs evil,I‚ll be happy to recommend a few other books. My Walker and Other Glamorous Accessories has no intention of changing the world, it's just a written confessional that besides being inspirational, the handicap heroine is just as neurotic and insane as the next guy. For examples of her writing, please visit the site.
URL: http://www.clarified.net

Title: COPD

Description: COPD - 30 million people in the United States have Chronic Obstructive Pulmonary Disease, only 50% are diagnosed. Chronic obstructive pulmonary disease, is now the fourth leading cause of death in the USA, costing the US $23.9 billion or more per year.
URL: http://copd.20m.com

Title: DisAbility Resource Site

Description: Welcome to the Brejcha Personal and disABILITY Resource Site
URL: http://www.netreach.net/~abrejcha

Title: Homepage of Kari Ann Owen

Description: IN THE NAME AND SPIRIT OF LOVE.
URL: http://www.reachoutmag.com/cgi-bin/index.pl?url=http://pwp.value.net/penomee/penomee.html

Title: MS And More 4 U

Description: I have Multiple Sclerosis & live in Maryland. I was born in Louisiana. My site has info on MS and sites for people with disabilities. I also added some for fun. Laughter is our best medicine!
URL: http://www.geocities.com/msandmore4u/msandmore4u.html

Title: Rick Ashton''s Home Page

Description: I have OPCA/SCA3, see my site for more info.
URL: http://www.reachoutmag.com/cgi-bin/index.pl?url=http://www.angelfire.com/ma/rick99/index.html

- posted by BJ @ 9:58 PM |

 
Dang, Got to Find Way to Code Non-Bold text
Sorry for the look of the text in posts. At present I have not located the proper html code to make sure that the post itself (not the title of the post) will appear in plain text. So, it is presently set to post in a sans-serif typeface so that it is easier to read for those with visual accessibility needs. Apparently there is a way to include headings in the template such as h1, h2, and the like but the supplied template from Blogger does not include these codes. And the Help/Knowledge Base articles merely suggest one learns more about coding from an off-site resource. Back to "school" for cobalt, webmaster of the ED Forum. Oh yes, there will be an actual posting forum included within the site as a link. Till then, use the "comments" feature to say "hey" to us. Thanks for visiting today!
- posted by BJ @ 8:19 PM |

 
US Dept of Ed Actually Does the Right Thing
Read this surprising change to the No Child Left Behind provisions! Although I personally wish for the departure of Rod Paige as head of the Dept of Education, I did find this release from December of 003. Read the snip below for the basics and go to the URL for the complete story.Underlined are this parent and teacher's own highlights within the story.

"New No Child Left Behind Provision Gives Schools Increased Flexibility While Ensuring All Children Count, Including Those With Disabilities

U.S. Secretary of Education Rod Paige today announced a new provision of the No Child Left Behind education reform law that will give local school districts greater flexibility in meeting the act's requirements for students with disabilities. The secretary made the announcement at a press conference with Special Olympics founder Eunice Shriver, House Education and Workforce Committee Chairman John Boehner and students with disabilities, their parents, relatives and teachers.

Under final rules to be published in today's Federal Register, states, school districts and schools will have the flexibility to count the 'proficient' scores of students with the most significant cognitive disabilities who take assessments based on alternate achievement standards. Without this flexibility, those scores would have to be measured against grade-level standards and considered 'not proficient' when states measure adequate yearly progress (AYP). The number of those proficient scores may not exceed 1 percent of all students in the grades tested (about 9 percent of students with disabilities).

In other words, those students will be assessed by their achievement of standards deemed appropriate for their intellectual development, thus allowing states to more accurately gauge their progress. All students--including students with disabilities--deserve teachers who believe in their potential and who will encourage them to make progress, just as all parents and teachers ought to have the assessment information they need to target their efforts and provide all students a high-quality education.

Nationally, about 9 percent of the total student population is served in special education, of which about 9 percent have the most significant cognitive disabilities.

'The No Child Left Behind Act is designed to ensure that all children receive a quality education in this country--and that means every single child, including those with disabilities,' said U.S. Secretary of Education Rod Paige. 'This provision strengthens two key promises of the law: accountability and flexibility. It rightly protects all parents' ability to receive information about their child's progress in school, while providing new flexibility for schools and districts in accounting for the progress made by all students, including those with the most significant cognitive disabilities."

- posted by BJ @ 8:03 PM |

 
OK Now for the Links
Here we go, off and away! In the meantime, enjoy this image from our link to sharemation.

---

Gas Prices Going Up?

- posted by BJ @ 2:17 PM |

 
Again a Trial
Ok, trying now for the Description and Link additions. In the meantime, visit http://resourcefull.antville.org or http://firedup.blogspot.com for entertainment.
- posted by BJ @ 2:11 PM |

 
Collecting the Details
This will take a bit of time, but daily will increase in links and commentary.
- posted by BJ @ 1:56 PM |

 
Collecting links and setting the template now. Volunteer commentators and contributors are welcome here. Contact webmaster cobalt.
- posted by BJ @ 1:43 PM |

 
Trial post to the ED Forum
- posted by BJ @ 1:21 PM |